Condition specific PROMs
| Group | Condition/population | Name | Abbreviated | Country developed | Year validated | Objective | Number of items | Number of dimensions | Name of dimensions | Self-report? | Reference of the original validation papers | Licencing or restrictions on use? | Fees apply? | Weblink/Contact details for authors for licensing information | Link to PROM survey form (if available) | Consensus-based Standards for the Selection of Health Status Measurement Instruments (COSMIN) available? | COSMIN reference/s (if available) |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Blood and metabolic | Anaemia, cancer patients | Functional Assessment Of Cancer Therapy - Anemia | FACT-AN | USA | 1997 | To assess specific quality of life concerns related to anaemia and fatigue in cancer patients. | 47 | 5 | Physical well-being; Social/Family well-being; Emotional well-being; Functional well-being; Anaemia-specific concerns (Additional Subscale) | Yes | Cella D. The Functional Assessment of Cancer Therapy-Anemia (FACT-An) Scale: a new tool for the assessment of outcomes in cancer anemia and fatigue. InSeminars in hematology 1997 Jul 1 (Vol. 34, No. 3 Suppl 2, pp. 13-19). | Yes | Unknown | https://www.facit.org/measures/fact-an | Nil | Yes | Bryant, A. L., Walton, A., Shaw-Kokot, J., Mayer, D. K., and Reeve, B. B. A Systematic Review of Psychometric Properties of Health-Related Quality-of-Life and Symptom Instruments in Adult Acute Leukemia Survivors. Cancer nursing. 2016;39(5):375-382. |
| Blood and metabolic | Anaemia; Fatigue; Chronic conditions | Functional Assessment Of Chronic Illness Therapy - Fatigue Scale | FACIT-F | USA | 1997 | To measure quality of life concerns related to fatigue in patients with cancer over the preceding 7 days. | 13 | No specific domains/dimensions identified | Yes | Yellen SB, Cella DF, Webster K, Blendowski C, Kaplan E. Measuring fatigue and other anemia-related symptoms with the Functional Assessment of Cancer Therapy (FACT) measurement system. Journal of pain and symptom management. 1997 Feb 1;13(2):63-74. Lai JS, Cella D, Kupst MJ, Holm S, Kelly ME, Bode RK, Goldman S. Measuring fatigue for children with cancer: development and validation of the pediatric Functional Assessment of Chronic Illness Therapy-Fatigue (pedsFACIT-F). Journal of Pediatric Hematology/Oncology. 2007 Jul 1;29(7):471-9. |
Yes | Unknown | o:SuzanneB.Yellen, PhD, Departmentof PsychologyandSocialSciences, Rush-Presbyterian-St.Luke’sMedicalCenter, 1653W. Harrison, Chicago, IL 60612, USA. | https://www.facit.org/measures/facit-fatigue | Yes | Amarsheda S, Bhise AR. Systematic review of cancer-related fatigue instruments in breast cancer patients. Palliative & supportive care. 2022 Feb;20(1):122-8. Machado MO, Kang NY, Tai F, Sambhi RD, Berk M, Carvalho AF, Chada LP, Merola JF, Piguet V, Alavi A. Measuring fatigue: a meta‐review. International journal of dermatology. 2021 Sep;60(9):1053-69. Crichton A, Knight S, Oakley E, Babl FE, Anderson V. Fatigue in child chronic health conditions: a systematic review of assessment instruments. Pediatrics. 2015 Apr 1;135(4):e1015-31. |
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| Cancer | Cancer care | Cancer Rehabilitation Evaluation System-Short Form | CARES-SF | USA | 1991 | To assess a wide variety of disruptions in daily living experienced by people with cancer. | 17 | 5 | Focus and concentration; Memory; Attention; Mental clarity; Mood and emotional well-being | Yes | Schag CA, Ganz PA, Heinrich RL. Cancer rehabilitation evaluation system–short form (CARES‐SF). A cancer specific rehabilitation and quality of life instrument. Cancer. 1991 Sep 15;68(6):1406-13. | Yes | Unknown | C. Anne Coscarelli Schag, PHD, Department of Psychiatry and Biobehavioral Medicine, UCLA School of Medicine. | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer care | Measure Yourself Concerns And Wellbeing | MYCaW | UK | 2007 | To measure of the concerns and wellbeing of people affected by cancer. | 5 | 2 | Concerns; Wellbeing | Yes | Paterson C, Thomas K, Manasse A, Cooke H, Peace G. Measure Yourself Concerns and Wellbeing (MYCaW): an individualised questionnaire for evaluating outcome in cancer support care that includes complementary therapies. Complementary therapies in medicine. 2007 Mar 1;15(1):38-45. Jolliffe R, Seers H, Jackson S, Caro E, Weeks L, Polley MJ. The responsiveness, content validity, and convergent validity of the Measure Yourself Concerns and Wellbeing (MYCaW) patient-reported outcome measure. Integrative Cancer Therapies. 2015 Jan;14(1):26-34. |
Yes | Unknown | https://www.meaningfulmeasures.co.uk/mycaw | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer care | Supportive Care Needs Survey | SCNS-SF34 | Australia | 2009 | To assess generic needs of patients with cancer. | 34 | 5 | Psychological; Health system and information; Physical and daily living; Patient care and support; Sexuality needs | Yes | Boyes A, Girgis A, Lecathelinais C. Brief assessment of adult cancer patients' perceived needs: development and validation of the 34‐item Supportive Care Needs Survey (SCNS‐SF34). Journal of evaluation in clinical practice. 2009 Aug;15(4):602-6. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P, et al (the Supportive Care Review Group). The unmet supportive care needs of patients with cancer. Supportive Care Review Group. Cancer 2000; 88:226-37 Bonevski B, Sanson‐Fisher R, Girgis A, Burton L, Cook P, Boyes A, Supportive Care Review Group. Evaluation of an instrument to assess the needs of patients with cancer. Cancer. 2000 Jan 1;88(1):217-25. |
PubliclYes available | Unknown | https://www.phenxtoolkit.org/protocols/view/321101 | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer caregivers | Caregiver Quality Of Life Index—Cancer | CQOLC | USA | 1999 | To measure quality of life of the family caregiver of patients with cancer. | 35 | 5 | Physical well-being; Psychological well-being; Social well-being; Functional well-being; Sexual well-being | Yes | Weitzner MA, Jacobsen PB, Wagner H, Friedland J, Cox C. The Caregiver Quality of Life Index–Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Quality of life Research. 1999 Jan;8:55-63. Weitzner MA, Mcmillan SC. The Caregiver Quality of Life Index-Cancer (CQOLC) Scale: revalidation in a home hospice setting. Journal of Palliative Care. 1999 Jun;15(2):13-20. |
No information | Unknown | M. A. Weitzner, Psychosocial Oncology Program, H. Lee Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612-9497, USA. Tel: (813)972-8483; Fax: (813)979-3906; email: weitznma@ moffitt.usf.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer side effects of treatment | Chemotherapy-Induced Peripheral Neuropathy Assessment Tool | CIPNAT | USA | 2011 | To measure the symptoms of chemotherapy-induced peripheral neuropathy. | 50 | 2 | Symptom experience; Interference | Yes | Tofthagen CS, McMillan SC, Kip KE. Development and psychometric evaluation of the chemotherapy-induced peripheral neuropathy assessment tool. Cancer Nursing. 2011 Jul 1;34(4):E10-20. | No information | Unknown | Cindy S. Tofthagen, PhD, ARNP, College of Nursing, University of South Florida, 12901 Bruce B. Downs Blvd, MDC22, Tampa, FL 33612 (ctofthag@health.usf.edu). | Nil | Yes | Li T, Park SB, Battaglini E, King MT, Kiernan MC, Goldstein D, Rutherford C. Assessing chemotherapy-induced peripheral neuropathy with patient reported outcome measures: a systematic review of measurement properties and considerations for future use. Quality of Life Research. 2022 Nov;31(11):3091-107. |
| Cancer | Cancer side effects of treatment | EORTC Quality of Life - Chemotherapy-Induced Peripheral Neuropathy | QLQ-CIPN20 | The Netherlands | 2005 | To elicit patients' experience of symptoms and functional limitations related to chemotherapy-induced peripheral neuropathy. | 20 | 3 | Sensory; Motor; Autonomic |
Yes | Postma TJ, Aaronson NK, Heimans JJ, Muller MJ, Hildebrand JG, Delattre JY, Hoang-Xuan K, Lantéri-Minet M, Grant R, Huddart R, Moynihan C, Maher J, Lucey R; EORTC Quality of Life Group. The development of an EORTC quality of life questionnaire to assess chemotherapy-induced peripheral neuropathy: the QLQ-CIPN20. Eur J Cancer. 2005 May;41(8):1135-9 | Yes | Unknown | https://qol.eortc.org/questionnaire/qlq-cipn20/ | Nil | Yes | Li T, Park SB, Battaglini E, King MT, Kiernan MC, Goldstein D, Rutherford C. Assessing chemotherapy-induced peripheral neuropathy with patient reported outcome measures: a systematic review of measurement properties and considerations for future use. Quality of Life Research. 2022 Nov;31(11):3091-107. |
| Cancer | Cancer side effects of treatment | Functional Living Index-Emesis | FLIE | USA | 2003 | To assess the impact of chemotherapy-induced nausea and vomiting on patient's daily function. | 18 | 2 | Vomiting; Nausea | Yes | Martin AR, Pearson JD, Cai B, Elmer M, Horgan K, Lindley C. Assessing the impact of chemotherapy-induced nausea and vomiting on patients' daily lives: a modified version of the Functional Living Index-Emesis (FLIE) with 5-day recall. Support Care Cancer. 2003 Aug;11(8):522-7. doi: 10.1007/s00520-003-0482-4. Epub 2003 Jun 25. PMID: 12827483. | Yes | Unknown | A. R. Martin, allison_martin@merck.com | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer side effects of treatment | Oral Mucositis Weekly Questionnaire--Head and Neck Cancer | OMWQ-HN | USA | 2007 | To assess the symptoms of mucositis, including mouth and throat soreness, and their impact on patient well-being and function. |
12 | No specific domains/dimensions identified | Yes | Epstein JB, Beaumont JL, Gwede CK, Murphy B, Garden AS, Meredith R, Le QT, Brizel D, Isitt J, Cella D. Longitudinal evaluation of the oral mucositis weekly questionnaire‐head and neck cancer, a patient‐reported outcomes questionnaire. Cancer. 2007 May 1;109(9):1914-22. | No information | Unknown | Joel B. Epstein, jepstein@uic.edu, Department of Oral Medicine and Diagnostic Sciences, College of Dentistry and Chicago Cancer Center, University of Illinois, Chicago, Illinois, Fax: (312) 355-2688 | Nil | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer side effects of treatment | Pediatric Nausea Assessment Tool | PeNAT | Canada | 2006 | To assess nausea intensity in children aged 4–18 years. | 1 | No specific domains/dimensions identified | Yes | Dupuis LL, Taddio A, Kerr EN, Kelly A, MacKeigan L. Development and validation of the pediatric nausea assessment tool for use in children receiving antineoplastic agents. Pharmacotherapy: The Journal of Human Pharmacology and Drug Therapy. 2006 Sep;26(9):1221-31. Garcia Frausto E, Sivananthan A, Golden C, Szuminski M, Prado LNP, Lopez MP, Diaz V, Nieto D, Plenert E, Langevin AM, Dupuis LL. Translation of the Pediatric Nausea Assessment Tool (PeNAT) Into Spanish and Evaluating Understandability Among Spanish-Speaking Hispanic American Children and Adolescents Receiving Chemotherapy. Hisp Health Care Int. 2022 Mar;20(1):33-39. doi: 10.1177/15404153211003341. Epub 2021 Apr 15. PMID: 33853416; PMCID: PMC8804537. |
No information | Unknown | Ms. L. Lee Dupuis, Department of Pharmacy, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada M5G 1X8; e-mail: lee.dupuis@sickkids.ca. | https://www.health.belgium.be/sites/default/files/uploads/fields/fpshealth_theme_file/casus_2_bijlage_penatscale.pdf | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer survivors | Impact Of Cancer Scale | IOC v2 | USA | 2008 | To assess the impact of cancer on the quality of life and other aspects of long-term cancer survivors. | 47 | 8 | Altruism and empathy; Health awareness; Meaning of cancer; Positive self-evaluation; Appearance concerns; Body change concerns; Life interferences; Worry | Yes | Crespi CM, Ganz PA, Petersen L, Castillo A, Caan B. Refinement and psychometric evaluation of the impact of cancer scale. JNCI: Journal of the National Cancer Institute. 2008 Nov 5;100(21):1530-41. | No information | Unknown | Catherine M. Crespi, PhD, Division of Cancer Prevention and Control Research, UCLA School of Public Health and Jonsson Comprehensive Cancer Center, 650 Charles Young Drive South, A2-125 CHS, Box 956900, Los Angeles, CA 90095-6900 (e-mail: ccrespi@ucla.edu ). | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer survivors | Piper Fatigue Scale Revised | PFS-R | USA | 1998 | To assess fatigue in breast cancer survivors. | 22 | 4 | Behaviour; Affect; Sensory; Cognition/mood | Yes | Piper BF, Dibble SL, Dodd MJ, Weiss MC, Slaughter RE, Paul SM. The revised Piper Fatigue Scale: psychometric evaluation in women with breast cancer. Oncol Nurs Forum. 1998 May;25(4):677-84. | No information | Unknown | B.F. Piper, College of Nursing, University of Nebraska Medical Center, Omaha, USA. | https://link.springer.com/article/10.1007/s10549-012-2212-4 | Yes | Amarsheda S, Bhise AR. Systematic review of cancer-related fatigue instruments in breast cancer patients. Palliative & supportive care. 2022 Feb;20(1):122-8. |
| Cancer | Cancer survivors | Quality Of Life – Cancer Survivors | QOL-CS | USA | 1995 | To measure distinct and relevant domains of quality of life for childhood cancer survivors. | 41 | 4 | Physical well-being; Psychological well-being; Social well-being; Spiritual well-being | Yes | Ferrell BR, Hassey Dow K, Grant M. Measurement of the quality of life in cancer survivors. Quality of life Research. 1995 Dec;4:523-31. Zebrack BJ, Chesler MA. A psychometric analysis of the Quality of Life-Cancer Survivors (QOL-CS) in survivors of childhood cancer. Quality of life research. 2001 May;10:319-29. |
No information | Unknown | B. R. Ferrell, Department of Nursing Research and Education, City of Hope National Medical Center, 1500 East Duarte Road, 91010, Duarte, CA, USA | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer survivors | Quality Of Life In Adult Cancer Survivors | QLACS | USA | 2005 | To measure seven domains that capture quality-of-life components that reflect issues of importance to cancer survivors. | 47 | 12 | Negative feelings; Positive feelings; Cognitive problems; Sexual problems; Physical pain; Fatigue; Social avoidance; Cancer-related: Financial problems; Family-related distress; Distress about recurrence; Appearance concerns; Benefits of having cancer | Yes | Avis NE, Smith KW, McGraw S, Smith RG, Petronis VM, Carver CS. Assessing quality of life in adult cancer survivors (QLACS). Quality of life research. 2005 May;14:1007-23. | No information | Unknown | Stephanie J Sohl, Department of Medicine, Vanderbilt University School of Medicine, Sixth Floor, Suite 600, 2525 West End Avenue, Nashville, TN 37203-1738, USA | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer survivors | Reintegration to Normal Living index | RNL | Canada | 1988 | To assess global function and measure both the patient's perceptions of their own capabilities and objective indicators of physical, social, and psychologic performance. | 11 | 2 | Daily functioning; Perceptions of self | Yes | Wood-Dauphinee SL, Opzoomer MA, Williams JI, Marchand B, Spitzer WO. Assessment of global function: The Reintegration to Normal Living Index. Arch Phys Med Rehabil. 1988 Aug;69(8):583-90. | No information | Unknown | S.L Wood-Dauphinee, School of Physical and Occupational Therapy, McGill University, Montreal, Quebec, Canada | https://www.sralab.org/rehabilitation-measures/reintegration-normal-living-index | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Bladder | Bladder Utility Symptom Scale | BUSS | Canada | 2018 | To measure health related quality of life in patients with non-invasive, invasive and metastatic bladder cancer. | 10 | 8 | Worry and sadness; Fatigue and tiredness; Pain and discomfort; Frequent and urgent urination; Urine leaking and spilling; Bowel problems; Sexual capability; Overall | Yes | Perlis N, Krahn M, Alibhai S, Finelli A, Ritvo P, Bremner KE, Kulkarni G. Conceptualizing global health-related quality of life in bladder cancer. Qual Life Res. 2014 Oct;23(8):2153-67. Perlis N, Krahn MD, Boehme KE, Alibhai SM, Jamal M, Finelli A, Sridhar SS, Chung P, Gandhi R, Jones J, Tomlinson G. The bladder utility symptom scale: a novel patient reported outcome instrument for bladder cancer. The Journal of Urology. 2018 Aug 1;200(2):283-91. |
No information | Unknown | Nathan Perlis, Division of Urology, Department of Surgical Oncology, Princess Margaret Hospital, University Health Network, University of Toronto, 610 University Avenue, 3-130, Toronto, ON, M5G 2M9, Canada, nathan.perlis@gmail.com | Nil | Yes | Mina S, Munevar CP, Osorio D, Garcia-Perdomo HA. Life quality evaluation in patients with bladder cancer: A systematic review. Actas Urológicas Españolas (English Edition). 2019 May 1;43(4):198-204. |
| Cancer | Cancer, Bladder | MD Anderson Symptom Inventory module for hepatectomy perioperative care | MDASI-PeriOp-Hep | USA | 2021 | To measure symptom severity and functional interference in patients undergoing liver surgery. | 24 | 3 | Core MDASI symptoms; Hepatectomy perioperative symptoms; MDASI interference | Yes | Wang XS, Shi Q, Williams LA, Lillemoe HA, Chen TY, Gottumukkala V, Garcia-Gonzalez A, Malveaux D, Kamal M, Cleeland CS, Aloia TA. Development of a patient-reported outcome tool for assessing symptom burden during perioperative care in liver surgery: the MDASI-PeriOp-Hep. European Journal of Oncology Nursing. 2021 Jun 1;52:101959. | Yes | Unknown | https://www.mdanderson.org/research/departments-labs-institutes/departm… | Nil | Yes | Aktas A, Walsh D, Kirkova J. The psychometric properties of cancer multisymptom assessment instruments: a clinical review. Supportive care in cancer. 2015 Jul;23:2189-202. |
| Cancer | Cancer, Bone | MyeloProliferative Neoplasm Symptom Assessment Form | MPN-SAF | USA | 2011 | To assess symptoms of myelofibrosis. | 18 | No specific domains/dimensions identified | Yes | Scherber R, Dueck AC, Johansson P, Barbui T, Barosi G, Vannucchi AM, Passamonti F, Andreasson B, Ferarri ML, Rambaldi A, Samuelsson J, Birgegard G, Tefferi A, Harrison CN, Radia D, Mesa RA. The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF): international prospective validation and reliability trial in 402 patients. Blood. 2011 Jul 14;118(2):401-8 | No information | Unknown | https://www.sciencedirect.com/science/article/pii/S0006497120447895 | None identified in March 2025 | None identified in March 2025 | ||
| Cancer | Cancer, Brain | Brain Metastases Symptom And Impact Questionnaire | BASIQ | USA | 2012 | To measure severity of brain metastases symptoms, and their impact on patients' activities of daily living and quality of life. | 18 | 2 | Severity; Impact | Yes | Lasch KE, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Fitzgerald K, Ray S. CN2 Development of a patient-reported outcome instrument in brain metastases: the Brain Metastases Symptom and Impact Questionniare (BASIQ). Value in Health. 2012 Jun 1;15(4):A1. Bedard G, Ray S, Zhang L, Zeng L, Cella D, Wong E, Danjoux C, Tsao M, Barnes E, Sahgal A, Holden L. Validation of the Brain Symptom and Impact Questionnaire (BASIQ) to assess symptom and quality of life in brain metastases. CNS oncology. 2014 Jul 31;3(4):275-85. Thavarajah N, Ray S, Bedard G, Zhang L, Cella D, Wong E, Danjoux C, Tsao M, Barnes E, Sahgal A, Soliman H. Psychometric validation of the Brain Symptom and Impact Questionnaire (BASIQ) version 1.0 to assess quality of life in patients with brain metastases. CNS oncology. 2015 Jan 31;4(1):11-23. |
Yes | Unknown | AbbVie, North Chicago, IL, USA, AbbVie Customer Service: 800-255-5162 | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Brain | Pediatric Functional Assessment of Cancer Therapy-Brain | Peds FACT-Br | USA | 2007 | To assess posttreatment Health-Related Quality of Life in brain tumour survivors and to monitor for residual effects from tumour and/or treatment across life span. | 34 | 4 | Physical well-being; Emotional well-being and illness experiences; Social well-being; Brain tumour-specific concerns | Yes | Lai JS, Cella D, Tomita T, Bode RK, Newmark M, Goldman S. Developing a health-related quality of life instrument for childhood brain tumor survivors. Childs Nerv Syst. 2007 Jan;23(1):47-57 | Yes | Unknown | https://www.facit.org/measures/peds-fact-br | https://www.facit.org/measures/peds-fact-br | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Breast | Body Image After Breast Cancer Questionnaire | BIBCQ | Canada | 2006 | To measure the long-term impact of breast cancer on body image in a multidimensional fashion. | 45 | 6 | Vulnerability; Body stigma; Limitations; Body concerns; Transparency; Arm concerns | Yes | Baxter NN, Goodwin PJ, Mcleod RS, Dion R, Devins G, Bombardier C. Reliability and validity of the body image after breast cancer questionnaire. The breast journal. 2006 May;12(3):221-32. | No information | Unknown | Nancy Baxter, MD, St. Michael Hospital, 30 Bond St., CC16040, Toronto, Ontario, Canada M5B 1W8, or e-mail: baxtern@smh.toronto.on.ca. | Nil | Yes | Chen CM, Cano SJ, Klassen AF, King T, McCarthy C, Cordeiro PG, Morrow M, Pusic AL. Measuring quality of life in oncologic breast surgery: a systematic review of patient‐reported outcome measures. The breast journal. 2010 Nov;16(6):587-97. |
| Cancer | Cancer, Breast | Breast Cancer Chemotherapy Questionnaire | BCQ | Canada | 1988 | To measure the impact of adjuvant chemotherapy on aspects of physical, emotional, and social functions of patients. | 30 | 7 | Loss of attractiveness; Fatigue; Physical symptoms; Inconvenience; Emotional distress; Feelings of hope; Support from others | Yes | Levine MN, Guyatt GH, Gent M, De Pauw S, Goodyear MD, Hryniuk WM, Arnold A, Findlay B, Skillings JR, Bramwell VH. Quality of life in stage II breast cancer: an instrument for clinical trials. Journal of Clinical Oncology. 1988 Dec;6(12):1798-810. | No information | Unknown | M N Levine, Ontario Cancer Treatment and Research Foundation, Hamilton Regional Cancer Centre, Canada. | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Breast | Breast Cancer Treatment Outcome Scale | BCTOS | USA | 2001 | To assess women’s subjective evaluation of the aesthetic and functional outcomes of breast cancer treatment. | 12 | 2 | Functional Status; Aesthetic status |
Yes | Stanton AL, Krishnan L, Collins CA. Form or function? Part 1. Subjective cosmetic and functional correlates of quality of life in women treated with breast-conserving surgical procedures and radiotherapy. Cancer. 2001 Jun 15;91(12):2273-81. | No information | Unknown | Annette L. Stanton, Ph.D., Department of Psychology, University of Kansas, Lawrence, Kansas | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Breast | BREAST-Q | BREAST-Q | UK | 2009 | To measure quality of life, satisfaction and experience among patients undergoing breast surgery. | 77 | 5 | Satisfaction with breasts; Psychosocial well-being; Sexual well-being; Physical well-being; Satisfaction with care | Yes | Pusic AL, Klassen AF, Scott AM, Klok JA, Cordeiro PG, Cano SJ. Development of a new patient-reported outcome measure for breast surgery: the BREAST-Q. Plastic and reconstructive surgery. 2009 Aug 1;124(2):345-53. Cano SJ, Klassen AF, Scott AM, Cordeiro PG, Pusic AL. The BREAST-Q: further validation in independent clinical samples. Plastic and reconstructive surgery. 2012 Feb 1;129(2):293-302. |
Yes | Unknown | https://qportfolio.org/breast-q/; qportfolioteam@gmail.com | Nil | Yes | Oles, N., Darrach, H., Landford, W., Garza, M., Twose, C., Park, C. S., Tran, P., Schechter, L. S., Lau, B., and Coon, D. Gender Affirming Surgery: A Comprehensive, Systematic Review of All Peer-Reviewed Literature and Methods of Assessing Patient-Centered Outcomes (Part 1: Breast/Chest, Face, and Voice). Ann Surg. 2020;275(1):52-66. |
| Cancer | Cancer, Breast | Fear Of Physical Activity/Exercise Scale-Breast Cancer | FPAX-B | USA | 2011 | To measure fear of physical activity and exercise in breast cancer survivors. | 17 | 3 | Endurance; Arm impairments; Exercise education | Yes | Sander AP, Elliot L, Newsome C, Roach J, Tasche L. Development and content validation of a scale to measure fear of physical activity and exercise in the breast cancer population. Rehabilitation Oncology. 2011 Jan 1;29(1):17-22. Sander AP, Cuisinier J, Marchinski CM. Construct Validation of a Tool to Measure Fear of Physical Activity and Exercise in Survivors of Breast Cancer-the FPAX-B. Rehabilitation Oncology. 2014 Jan 1;32(2):21-8. |
Yes | Unknown | Contact: Antoinette P. Sander, t-sander@northwestern.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Breast | Hopwood Body Image Scale | HBIS | UK | 2001 | To assess distress and dissatisfaction with body image. | 10 | 3 | Body image dissatisfaction; Self-consciousness; Emotional impact | Yes | Hopwood P, Fletcher I, Lee A, Al Ghazal S. A body image scale for use with cancer patients. European journal of cancer. 2001 Jan 1;37(2):189-97. | No information | Unknown | P Hopwood. CRC Psychological Medicine Group, Stanley House, Christie Hospital NHS Trust, Wilmslow Road, Withington, Manchester, M20 4BX, UK. penelope.hopwood@man.ac.uk | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Breast | Kwan's Arm Problem Scale | KAPS | Canada | 2002 | To determine the prevalence of and contributing factors for chronic arm morbidity including lymphedema in breast cancer patients after treatment and to assess the impact of arm morbidity on quality of life. | 13 | 3 | Physical function; Emotional function; Daily activities | Yes | Kwan W, Jackson J, Weir LM, Dingee C, McGregor G, Olivotto IA. Chronic arm morbidity after curative breast cancer treatment: prevalence and impact on quality of life. Journal of Clinical Oncology. 2002 Oct 15;20(20):4242-8. Nesvold IL, Fosså SD, Naume B, Dahl AA. Kwan’s arm problem scale: psychometric examination in a sample of stage II breast cancer survivors. Breast cancer research and treatment. 2009 Sep;117:281-8. |
No information | Unknown | Winkle Kwan, MD, British Columbia Cancer Agency–Fraser Valley Centre, 13750 96th Ave, Surrey, British Columbia V3V 1Z2, Canada; email: wkwan@bccancer.bc.ca. | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Breast | Upper Limb Lymphedema 27 Scale | ULL-27 | France | 2002 | To assess the consequences of lymphedema on women's quality of life. | 27 | 4 | Physical; Psychological; Symptoms; Social | Yes | Launois R, Megnigbeto AC, Pocquet K, et al.. A specific quality of life scale in upper limb lymphedema: the ULL-27 questionnaire. Lymphology. 2002;35:181–187. Coriddi M, Kim L, McGrath L, Encarnacion E, Brereton N, Shen Y, Barrio AV, Mehrara B, Dayan JH. Accuracy, sensitivity, and specificity of the LLIS and ULL27 in detecting breast cancer-related lymphedema. Annals of surgical oncology. 2022 Jan;29:438-45. |
No information | Unknown | R. Launois, Université PARIS XIII – Département de Santé Publique– Bobigny, France | Nil | Yes | Meilani E, Zanudin A, Mohd Nordin NA. Psychometric properties of quality of life questionnaires for patients with breast cancer-related lymphedema: a systematic review. International Journal of Environmental Research and Public Health. 2022 Feb 22;19(5):2519. Beelen LM, van Dishoeck AM, Tsangaris E, Coriddi M, Dayan JH, Pusic AL, Klassen A, Vasilic D. Patient-reported outcome measures in lymphedema: a systematic review and COSMIN analysis. Annals of surgical oncology. 2021 Mar;28:1656-68. |
| Cancer | Cancer, Breast; Menopause | Hot Flash Related Daily Interference Scale | HFRDIS | USA | 2001 | To assess the impact of hot flashes on overall quality of life and daily activities. | 10 | No specific domains/dimensions identified | Yes | Carpenter JS. The Hot Flash Related Daily Interference Scale: a tool for assessing the impact of hot flashes on quality of life following breast cancer. J Pain Symptom Manage. 2001 Dec;22(6):979-89 | Yes | Unknown | https://www.jscarpenter.com/ | Nil | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer, Central nervous system tumours | Three Factor Eating Questionnaire revised 18-item version 2 | TFEQ-R18V2 | USA | 2016 | To measure cognitive and behavioural components of eating. | 18 | 3 | Uncontrollable eating; Cognitive restraint; Emotional eating | Yes | Swartz MC, Basen-Engquist KM, Markham C, Lyons EJ, Cox M, Chandra J, Ater JL, Askins MA, Scheurer ME, Lupo PJ, Hill R. Psychometric analysis of the three-factor eating questionnaire-R18V2 in adolescent and young adult-aged central nervous system tumor survivors. Journal of adolescent and young adult oncology. 2016 Sep 1;5(3):278-85. Cappelleri JC, Bushmakin AG, Gerber RA, Leidy NK, Sexton CC, Lowe MR, Karlsson J. Psychometric analysis of the Three-Factor Eating Questionnaire-R21: results from a large diverse sample of obese and non-obese participants. Int J Obes (Lond). 2009 Jun;33(6):611-20. |
No information | Unknown | https://www.med.umich.edu/pdf/weight-management/TFEQ-r18.pdf | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer, general | Cancer Pain Inventory | CPI | USA | 2010 | To provide a comprehensive assessment of cancer-related pain and evaluate the effectiveness of pain management strategies. | 19 | 5 | Pain intensity; Emotional impact of pain; Interference with daily activities; Social and relational impacts; Response to pain treatments | Yes | Deshields TL, Tait RC, Manwaring J, Trinkaus KM, Naughton M, Hawkins J, Jeffe DB. The Cancer Pain Inventory: preliminary development and validation. Psycho‐Oncology. 2010 Jul;19(7):684-92. | No information | Unknown | Teresa L. Deshields, Siteman Cancer Center, Mailstop: 90-35-703, 4921 Parkview Place, St. Louis, MO 63110, USA. E-mail: tld2593@bjc.org | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, general | European Organisation For Research And Treatment Of Cancer Core Quality-of-Life Questionnaire | EORTC QLQ-30 | The Netherlands | 1993 | To assess some of the different aspects that define the quality of life of cancer patients. | 30 | 9 | Physical; Role; Cognitive; Emotional; Social; Fatigue; Pain; Nausea and vomiting; Global health and quality of life | Yes | Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, Haes JC, Kaasa S. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. JNCI: Journal of the National Cancer Institute. 1993 Mar 3;85(5):365-76. | Yes | Unknown | Neil K. Aaronson, Ph.D., Division of Psychosocial Research and Epidemiology. The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands. | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, general | Functional Assessment Of Cancer Therapy Scale - General | FACT-G | USA | 1993 | To measure the quality of life in people with cancer. | 27 | 4 | Physical well-being; Social/Family well-being; Emotional well-being; Functional well-being | Yes | Cella D. The Functional Assessment of Cancer Therapy (FACT) Scale: Development and validation of the general measure. J Clinl Oncol. 1993;11:1407-18. | Yes | Unknown | https://www.facit.org/measures/fact-g | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, general | Functional Living Index-Cancer | FLIC | Canada | 1984 | To assess the effect of the symptoms of cancer and its treatment on functional ability in all areas of life. | 22 | 5 | Psychological well-being; Social functioning; Disease-specific concerns; General quality of Life | Yes | Schipper H, Clinch J, McMurray A, Levitt M. Measuring the quality of life of cancer patients: the Functional Living Index-Cancer: development and validation. Journal of clinical Oncology. 1984 May;2(5):472-83. | Yes | Unknown | H. Schipper. MD. Department ofj Medicine, St. Boniface General Hospital, 409 Tache Avenue, Winnipeg. Manitoba R2H 2A6. | Nil | Yes | Wohlleber, K., Heger, P., Probst, P., Engel, C., Diener, M. K., and Mihaljevic, A. L. Health-related quality of life in primary hepatic cancer: a systematic review assessing the methodological properties of instruments and a meta-analysis comparing treatment strategies. Quality of Life Research. 2021;30:2429-2466. |
| Cancer | Cancer, general | Location-Based Assessment Of Sensory Symptoms In Cancer | L-BASIC | USA | 2009 | To evaluate the impact of sensory symptoms on patients' quality of life. | 34 | 10 | Head; Neck and Shoulders; Arms; Hands; Chest and Upper Back; Abdomen and Lower Back; Hips and Pelvis; Thighs and Knees; Calves; Feet | Yes | Burkey AR, Kanetsky PA. Development of a novel location-based assessment of sensory symptoms in cancer patients: preliminary reliability and validity assessment. Journal of pain and symptom management. 2009 May 1;37(5):848-62. | No information | Unknown | Adam R. Burkey, MD, MSCE, 2nd Floor Tuttleman Building, 1840 South Street, Philadelphia, PA 19104, USA, E-mail: burkeya@uphs.upenn.edu | Nil | ||
| Cancer | Cancer, general | MD Anderson Symptom Inventory | MDASI | USA | 2000 | To assess the severity of multiple symptoms and the impact of symptoms on daily functioning. | 13 | 6 | Walking; Activity; Working; Relations with other people; Enjoyment of life; Mood | Yes | Cleeland CS, Mendoza TR, Wang XS, Chou C, Harle MT, Morrissey M, Engstrom MC. Assessing symptom distress in cancer patients: the MD Anderson Symptom Inventory. Cancer: Interdisciplinary International Journal of the American Cancer Society. 2000 Oct 1;89(7):1634-46. | Yes | Unknown | https://www.mdanderson.org/research/departments-labs-institutes/departm… | Nil | Yes | Bryant, A. L., Walton, A., Shaw-Kokot, J., Mayer, D. K., and Reeve, B. B. A Systematic Review of Psychometric Properties of Health-Related Quality-of-Life and Symptom Instruments in Adult Acute Leukemia Survivors. Cancer nursing. 2016;39(5):375-382. |
| Cancer | Cancer, general | Patient Reported Outcome Version Of Common-Terminology-Criteria-For-Adverse-Events | PRO-CTCAE | USA | 2014 | To characterise the frequency, severity and interference of symptomatic treatment toxicities. | 124 | 4 | Frequency; Severity; Interference; Presence/absence of symptomatic toxicities. | Yes | Basch E, Reeve BB, Mitchell SA, Clauser SB, Minasian LM, Dueck AC, Mendoza TR, Hay J, Atkinson TM, Abernethy AP, Bruner DW, Cleeland CS, Sloan JA, Chilukuri R, Baumgartner P, Denicoff A, St Germain D, O'Mara AM, Chen A, Kelaghan J, Bennett AV, Sit L, Rogak L, Barz A, Paul DB, Schrag D. Development of the National Cancer Institute's patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE). J Natl Cancer Inst. 2014 Sep 29;106(9):dju244 | Yes | Unknown | Copyright information: PRO-CTCAE™© US National Cancer Institute, 2014. All rights reserved; https://healthcaredelivery.cancer.gov/pro-ctcae/overview.html | https://healthcaredelivery.cancer.gov/pro-ctcae/instrument-pro.html | Yes | Li T, Park SB, Battaglini E, King MT, Kiernan MC, Goldstein D, Rutherford C. Assessing chemotherapy-induced peripheral neuropathy with patient reported outcome measures: a systematic review of measurement properties and considerations for future use. Quality of Life Research. 2022 Nov;31(11):3091-107. |
| Cancer | Cancer, general | Pediatric - Patient-Reported Outcomes – Common Terminology Criteria for Adverse Events | Ped-PRO-CTCAE | USA | 2014 | To characterize the frequency, severity and interference of symptomatic treatment toxicities in children. | 130 | 4 | Frequency; Severity; Interference; Presence/absence | Yes | Reeve BB, Withycombe J, Tomlinson D, Sung L, Mowbray C, Martens C, Mack JW, Lyons JC, Kohler RK, Keller S, Jacobs SS. Integrating the child’s voice in adverse event reporting in oncology trials: Initial steps in the pediatric pro-ctcae initiative. Value in Health. 2014 May 1;17(3):A197. Reeve BB, McFatrich M, Mack JW, Maurer SH, Jacobs SS, Freyer DR, Withycombe JS, Baker JN, Castellino SM, Lin L, Lucas NR. Validity and reliability of the pediatric patient-reported outcomes version of the common terminology criteria for adverse events. JNCI: Journal of the National Cancer Institute. 2020 Nov;112(11):1143-52. |
Yes | Unknown | Copyright information: PRO-CTCAE™© US National Cancer Institute, 2014. All rights reserved; https://healthcaredelivery.cancer.gov/pro-ctcae/overview.html | https://healthcaredelivery.cancer.gov/pro-ctcae/instrument-ped.html | Yes | Pinheiro LC, McFatrich M, Lucas N, Walker JS, Withycombe JS, Hinds PS, Sung L, Tomlinson D, Freyer DR, Mack JW, Baker JN. Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review. Quality of life research. 2018 Feb;27:291-319. |
| Cancer | Cancer, general | Rotterdam Symptom Checklist | RSCL | The Netherlands | 1990 | To measure the quality of life in cancer patients. | 58 | 3 | Physical symptoms; psychological distress; Activity level | Yes | De Haes JC, Van Knippenberg FC, Neijt J. Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. British journal of cancer. 1990 Dec;62(6):1034-8. Watson M, Law M, Maguire GP, Robertson B, Greer S, Bliss JM, Ibbotson T. Further development of a quality of life measure for cancer patients: The Rotterdam Symptom Checklist (revised). Psycho‐Oncology. 1992 Apr;1(1):35-44. |
Yes | Unknown | J.C.J.M. de Psychology. Haes, Department of Medical University Hospital (AMC), Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands. | https://meetinstrumentenzorg.nl/wp-content/uploads/instrumenten/RSCL-handl.pdf | Yes | Campbell, R., Bultijnck, R., Ingham, G., Sundaram, C. S., Wiley, J. F., Yee, J., ... & Shaw, J. A review of the content and psychometric properties of cancer-related fatigue (CRF) measures used to assess fatigue in intervention studies. Supportive Care in Cancer. 2022;30(11):8871-8883. |
| Cancer | Cancer, general | Treatment-Induced Peripheral Neuropathy Scale | TNAS | USA | 2015 | To rate the severity of their neuropathy-related symptoms in the last 24 hours. | 13 | 3 | Sensory Symptoms; Motor Symptoms; Functional Impact | Yes | Mendoza TR, Wang XS, Williams LA, Shi Q, Vichaya EG, Dougherty PM, Thomas SK, Yucel E, Bastida CC, Woodruff JF, Cleeland CS. Measuring therapy-induced peripheral neuropathy: preliminary development and validation of the treatment-induced neuropathy assessment scale. The Journal of Pain. 2015 Oct 1;16(10):1032-43. | No information | Unknown | R. Mendoza, PhD, Department of Symptom Research, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 1450, Houston, TX 77030. tmendoza@mdanderson.org |
Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Head/neck | EORTC Quality of Life Questionnaire Head and Neck Module | QLQ-H&N35 | Norway | 1994 | To assess health-related quality of life in head and neck cancer patients; To be used in conjunction with the EORTC QLQ-C30. | 35 | 7 | Pain; Swallowing; Senses; Speech; Social eating; Social contact; Sexuality | Yes | Bjordal K, Ahlner-Elmqvist M, Tollesson E, Jensen AB, Razavi D, Maher EJ, Kaasa S. Development of a European Organization for Research and Treatment of Cancer (EORTC) questionnaire module to be used in quality of life assessments in head and neck cancer patients. EORTC Quality of Life Study Group. Acta Oncol. 1994;33(8):879-85. Bjordal K, Hammerlid E, Ahlner-Elmqvist M, De Graeff A, Boysen M, Evensen JF, Biörklund A, De Leeuw JR, Fayers PM, Jannert M, Westin T. Quality of life in head and neck cancer patients: validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-H&N35. Journal of Clinical Oncology. 1999 Mar;17(3):1008. Bjordal, K., De Graeff, A., Fayers, P. M., Hammerlid, E., van Pottelsberghe, C., Curran, D., ... & EORTC Quality of Life Group. (2000). A 12 country field study of the EORTC QLQ-C30 (version 3.0) and the head and neck cancer specific module (EORTC QLQ-H&N35) in head and neck patients. European journal of cancer, 36(14), 1796-1807. |
Yes | Unknown | https://qol.eortc.org/questionnaire/qlq-hn43/ | Nil | Yes | Ringash J, Bezjak A. A structured review of quality of life instruments for head and neck cancer patients. Head & Neck: Journal for the Sciences and Specialties of the Head and Neck. 2001 Mar;23(3):201-13 Djan R, Penington A. A systematic review of questionnaires to measure the impact of appearance on quality of life for head and neck cancer patients. Journal of Plastic, Reconstructive & Aesthetic Surgery. 2013 May 1;66(5):647-59. |
| Cancer | Cancer, Head/neck | FACT/McGill Body Image Scale – Head & Neck | FACT-MBIS | Canada | 2019 | To measure body image concerns of patients with head and neck cancer. | 21 | 2 | Social discomfort; Negative self-image | Yes | Rodriguez AM, Frenkiel S, Desroches J, De Simone A, Chiocchio F, MacDonald C, Black M, Zeitouni A, Hier M, Kost K, Mlynarek A, Bolster-Foucault C, Rosberger Z, Henry M. Development and validation of the McGill body image concerns scale for use in head and neck oncology (MBIS-HNC): A mixed-methods approach. Psychooncology. 2019 Jan;28(1):116-121 | PubliclYes available | Unknown | https://www.facit.org/measures/fact-mbis | https://www.facit.org/measures/fact-mbis | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Head/neck | Inventory to Measure and Assess imaGe disturbance - Head and Neck | IMAGE-HN | USA | 2020 | To assess self-perceived changes in appearance and function in head and neck cancer survivors. | 31 | 5 | Other-oriented appearance concerns; Personal dissatisfaction with appearance; Distress with functional impairments; Appearance concealment; Social avoidance and isolation | Yes | Graboyes EM, Hand BN, Ellis MA, Huang AT, Nilsen ML, Pipkorn P, Marsh CH, Maurer S, Day TA, Sterba KR. Validation of a novel, multidomain head and neck cancer appearance-and function-distress patient-reported outcome measure. Otolaryngology–Head and Neck Surgery. 2020 Nov;163(5):979-85. Macias D, Hand BN, Pipkorn P, Williams AM, Chang SS, Zenga J, Nilsen ML, Rhoten BA, Huang AT, Osazuwa-Peters N, Maurer S. Association of inventory to measure and assess image disturbance–head and neck scores with clinically meaningful body image-related distress among head and neck cancer survivors. Frontiers in Psychology. 2021 Dec 10;12:794038. |
No information | Unknown | Evan M. Graboyes, Department of Otolaryngology–Head and Neck Surgery, Medical University of South Carolina, Charleston, South Carolina, USA; Hollings Cancer Center, Medical University of South Carolina, Charleston, South Carolina, USA, graboyes@musc.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Head/neck | Liverpool Oral Rehabilitation Questionnaire (version 3) | LORQv3 | UK | 2006 | To assess issues and problems related to patients undergoing oral rehabilitation following treatment for head and neck cancer. | 40 | 5 | Oral function; Oro-facial appearance; Social interaction; Prostheses; Patient denture/prosthetic satisfaction | Yes | Pace-Balzan A, Cawood JI, Howell R, Lowe D, Rogers SN. The Liverpool Oral Rehabilitation Questionnaire: a pilot study. J Oral Rehabil. 2004 Jun;31(6):609-17 Pace-Balzan A, Cawood JI, Howell R, Butterworth CJ, Lowe D, Rogers SN. The further development and validation of the Liverpool Oral Rehabilitation Questionnaire: a cross-sectional survey of patients attending for oral rehabilitation and general dental practice. Int J Oral Maxillofac Surg. 2006 Jan;35(1):72-8 |
PubliclYes available | Unknown | https://www.hancsupport.com/professionals/quality-life/qol-questionnaires/liverpool-oral-rehabilitation-questionnaire | Yes | In’t Veld M, Jager DH, Chhangur CN, Ziesemer KA, Leusink FK, Schulten EA. Oral-functioning questionnaires in patients with head and neck cancer: A scoping review. Journal of Clinical Medicine. 2023 Jun 10;12(12):3964. | |
| Cancer | Cancer, Head/neck | Neck Dissection Impairment Index | NDII | USA | 2002 | To assess the long-term effects of neck dissection on quality of life related to shoulder dysfunction. | 10 | No specific domains/dimensions identified | Yes | Taylor RJ, Chepeha JC, Teknos TN, Bradford CR, Sharma PK, Terrell JE, Hogikyan ND, Wolf GT, Chepeha DB. Development and validation of the neck dissection impairment index: a quality of life measure. Arch Otolaryngol Head Neck Surg. 2002 Jan;128(1):44-9. | No information | Unknown | Rodney J. Taylor, Department of Otolaryngology–Head and Neck Surgery, University of Michigan, Ann Arbor. | Nil | Yes | Ojo B, Genden EM, Teng MS, Milbury K, Misiukiewicz KJ, Badr H. A systematic review of head and neck cancer quality of life assessment instruments. Oral oncology. 2012 Oct 1;48(10):923-37. Eden MM, Flores AM, Galantino ML, Spinelli BA. Recommendations for patient-reported outcome measures for head and neck cancer-related shoulder dysfunction: a systematic review. Rehabilitation Oncology. 2014 Jan 1;32(3):6-19. |
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| Cancer | Cancer, Head/neck | Sydney Swallow Questionnaire | SSQ | Australia | 2000 | To measure symptomatic severity of oral-pharyngeal dysphagia. | 17 | 2 | General; Quality of life | Yes | Wallace KL, Middleton S, Cook IJ. Development and validation of a self-report symptom inventory to assess the severity of oral-pharyngeal dysphagia. Gastroenterology. 2000 Apr 1;118(4):678-87. Dwivedi RC, Rose SS, Roe JW, Khan AS, Pepper C, Nutting CM, Clarke PM, Kerawala CJ, Rhys-Evans PH, Harrington KJ, Kazi R. Validation of the Sydney Swallow Questionnaire (SSQ) in a cohort of head and neck cancer patients. Oral oncology. 2010 Apr 1;46(4):e10-4. |
Yes | Unknown | https://stgeorgeswallowcentre.org/wp-content/uploads/2019/02/SSQ-21.09… | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer, Head/neck | University of Washington Quality of Life Instruments | UW-QOL-R | SA | 2001 | To detect changes in quality of life, specific to head and neck cancer. | 10 | No specific domains/dimensions identified | Yes | Weymuller EA Jr, Alsarraf R, Yueh B, Deleyiannis FW, Coltrera MD. Analysis of the performance characteristics of the University of Washington Quality of Life instrument and its modification (UW-QOL-R). Arch Otolaryngol Head Neck Surg 2001; 127:489-93 Rogers SN, Gwanne S, Lowe D, Humphris G, Yueh B, Weymuller EA Jr. The addition of mood and anxiety domains to the University of Washington quality of life scale. Head Neck. 2002 Jun;24(6):521-9 |
Yes | Unknown | Sammy J. Hassan and Ernest A. Weymuller, Department of Otolaryngology-Head and Neck Surgery, University of Washington, Seattle, Washington | Nil | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer, Head/neck | Vanderbilt Head and Neck Symptom Survey | VHNSS | USA | 2009 | To assess head and neck-specific symptom burden and function loss. | 28 | 5 | Nutrition; Pain; Voice; Swallow; Mucous/Dry Mouth | Yes | Murphy BA, Dietrich MS, Wells N, Dwyer K, Ridner SH, Silver HJ, Gilbert J, Chung CH, Cmelak A, Burkey B, Yarbrough WG, Sinard R, Netterville J. Reliability and validity of the Vanderbilt Head and Neck Symptom Survey: a tool to assess symptom burden in patients treated with chemoradiation. Head Neck. 2010 Jan;32(1):26-37. | No information | Unknown | Barbara A. Murphy, barbara.murphy@vanderbilt.edu, Department of Medicine, Vanderbilt University Medical Center | Nil | Yes | In’t Veld M, Jager DH, Chhangur CN, Ziesemer KA, Leusink FK, Schulten EA. Oral-functioning questionnaires in patients with head and neck cancer: A scoping review. Journal of Clinical Medicine. 2023 Jun 10;12(12):3964. |
| Cancer | Cancer, Kidney | National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Kidney Cancer Symptom Index - 19 Item Version (NFKSI-19) | NFKSI-19 | USA | 2013 | To assess symptoms in kidney cancer patients. | 19 | 3 | Disease-related symptoms; Treatment side effects; General function and well-being | Yes | Rothrock NE, Jensen SE, Beaumont JL, Abernethy AP, Jacobsen PB, Syrjala K, Cella D. Development and initial validation of the NCCN/FACT symptom index for advanced kidney cancer. Value Health. 2013 Jul-Aug;16(5):789-96. | Yes | Unknown | https://www.facit.org/ | https://www.facit.org/measures/nfksi-19 | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Lung | Cataldo Lung Cancer Stigma Scale | CLCSS | USA | 2011 | To measure the stigma perceived by people with lung cancer. | 31 | 4 | Stigma and shame; Social Isolation; Discrimination; Smoking | Yes | Cataldo JK, Slaughter R, Jahan TM, Pongquan VL, Hwang WJ. Measuring stigma in people with lung cancer: psychometric testing of the cataldo lung cancer stigma scale. InOncology nursing forum 2011 Jan 1 (Vol. 38, No. 1, p. E46). NIH Public Access. | No information | Unknown | Janine K. Cataldo, RN, PhD, Department of Physiological Nursing–Gerontology, University of California, San Francisco, janine.cataldo@nursing.ucsf.edu, with copy to editor at ONFEditor@ons.org. | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Lung | Lung Cancer Stigma Inventory | LCSI | USA | 2018 | To measure the stigma experienced by individuals diagnosed with lung cancer. | 25 | 3 | Perceived stigma; Internalized stigma; Constrained disclosure | Yes | Hamann HA, Shen MJ, Thomas AJ, Lee SJ, Ostroff JS. Development and preliminary psychometric evaluation of a patient-reported outcome measure for lung cancer stigma: The Lung Cancer Stigma Inventory (LCSI). Stigma and health. 2018 Aug;3(3):195. | No information | Unknown | Heidi A. Hamann, Department of Psychology, University of Arizona, Tucson, Arizona. Electronic address: heidihamann@arizona.edu. | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Lung | Lung Cancer Symptom Scale | LCSS | USA | 1993 | To measure health related quality of life with emphasis on assessment of degree of palliation and lung cancer symptom control in patients receiving treatment for the malignancy or participating in clinical trials. | 15 | 5 | Physical QL; Functional QL; Psychological; Social; Spiritual | Yes | Hollen PJ, Gralla RJ, Kris MG, Potanovich LM. Quality of life assessment in individuals with lung cancer: testing the Lung Cancer Symptom Scale (LCSS). European Journal of Cancer. 1993 Jan 1;29:S51-8. Hollen PJ, Gralla RJ, Kris MG, Cox C, Belani CP, Grunberg SM, Crawford J, Neidhart JA. Measurement of quality of life in patients with lung cancer in multicenter trials of new therapies. Psychometric assessment of the Lung Cancer Symptom Scale. Cancer. 1994 Apr 15;73(8):2087-98. |
Yes | Unknown | Patricia Hollen, PhD, RN, FAAN Quality of Life Research Associates, LLC 548 Worthington Drive Charlottesville, VA 22903 USA E-mail: lcss.qlra@gmail.com Fax #: 1.434.982.3250 |
Nil | Yes | Bausewein, C., Farquhar, M., Booth, S., Gysels, M., and Higginson, I. J. Measurement of breathlessness in advanced disease: a systematic review. Respiratory medicine. 2007;101(3):399-410. |
| Cancer | Cancer, Lung | National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy - Lung Symptom Index | NFLSI-17 | USA | 2012 | To assess high priority symptoms/quality of life concerns in patients with advanced lung cancer. | 17 | No specific domains/dimensions identified | Yes | Yount S, Beaumont J, Rosenbloom S, Cella D, Patel J, Hensing T, Jacobsen PB, Syrjala K, Abernethy AP. A brief symptom index for advanced lung cancer. Clin Lung Cancer. 2012 Jan;13(1):14-23 | Yes | Unknown | https://www.facit.org/ | https://www.facit.org/measures/nflsi-17 | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer, Lung | Non–Small Cell Lung Cancer Symptom Assessment Questionnaire | NSCLC-SAQ | USA | 2016 | To assess self-reported severity of symptoms in patients 18 years and older with advanced NSCLC (Stage IIIB/IV) and Eastern Cooperative Oncology Group performance status of 0-2. | 7 | 5 | Cough; Pain; Dyspnea; Fatigue; Appetite | Yes | McCarrier KP, Atkinson TM, DeBusk KP, Liepa AM, Scanlon M, Coons SJ; Patient-Reported Outcome Consortium, Non–Small Cell Lung Cancer Working Group. Qualitative Development and Content Validity of the Non-small Cell Lung Cancer Symptom Assessment Questionnaire (NSCLC-SAQ), A Patient-reported Outcome Instrument. Clin Ther. 2016 Apr;38(4):794-810 Williams P, Burke T, Norquist JM, Daskalopoulou C, Speck RM, Samkari A, Eremenco S, Coons SJ. Non-Small Cell Lung Cancer Symptom Assessment Questionnaire (NSCLC-SAQ): Measurement Properties and Estimated Clinically Meaningful Thresholds From a Phase 3 Study. JTO Clin Res Rep. 2022 Feb 17;3(4):100298. doi: 10.1016/j.jtocrr.2022.100298. PMID: 35400081; PMCID: PMC8983345. Bushnell DM, Atkinson TM, McCarrier KP, Liepa AM, DeBusk KP, Coons SJ, Patient-Reported Outcome Consortium's NSCLC Working Group. Non–Small Cell Lung Cancer Symptom Assessment Questionnaire: Psychometric Performance and Regulatory Qualification of a Novel Patient-Reported Symptom Measure. Current Therapeutic Research. 2021 Jan 1;95:100642. |
Yes | Unknown | Kelly P. McCarrier, PhD, MPH, Health Research Associates, 6505 216th St. SW, Suite 105, Mountlake Terrace, WA 98043; mccarrier@hrainc.net | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Mental health | Body Image Scale | BIS | UK | 2001 | To assess body image changes in patients with cancer. | 10 | No specific domains/dimensions identified | Yes | Hopwood P, Fletcher I, Lee A, Al Ghazal S. A body image scale for use with cancer patients. Eur J Cancer. 2001 Jan;37(2):189-97 | PubliclYes available | Unknown | https://www.researchgate.net/publication/12164236_A_body_image_scale_for_use_with_cancer_patients/link/5a9ff69945851543e635309e/download?_tp=eyJjb250ZXh0Ijp7ImZpcnN0UGFnZSI6InB1YmxpY2F0aW9uIiwicGFnZSI6InB1YmxpY2F0aW9uIn19 | None identified in March 2025 | None identified in March 2025 | ||
| Cancer | Cancer, Ovarian | Measure of Ovarian Symptoms and Treatment | MOST-T35 | Australia | 2014 | To assess symptom burden, adverse effects, and symptom benefit in recurrent ovarian cancer. | 35 | 5 | Abdominal symptoms (MOST-Abdo); Disease or treatment-related symptoms (MOST-DorT); Chemotherapy-related symptoms (MOST-Chemo); Psychological symptoms (MOST-Psych); Well-being (MOST-Wellbeing) | Yes | Campbell R, Costa DSJ, Stockler MR, Lee YC, Ledermann JA, Berton D, Sehouli J, Roncolato FT, Connell RO, Okamoto A, Bryce J, Oza AM, Avall-Lundqvist E, Berek JS, Lanceley A, Joly F, Hilpert F, Feeney A, Kaminsky MC, Diamante K, Friedlander ML, King MT; GCIG Symptom Benefit Group. Measure of Ovarian Symptoms and Treatment concerns (MOST) indexes and their associations with health-related quality of life in recurrent ovarian cancer. Gynecol Oncol. 2022 Aug;166(2):254-262. doi: 10.1016/j.ygyno.2022.05.024. Epub 2022 Jun 17. PMID: 35718565. King MT, Stockler MR, O'Connell RL, Buizen L, Joly F, Lanceley A, Hilpert F, Okamoto A, Aotani E, Bryce J, Donnellan P, Oza A, Avall-Lundqvist E, Berek JS, Sehouli J, Feeney A, Berton-Rigaud D, Costa DSJ, Friedlander ML; GCIG Symptom Benefit group. Measuring what matters MOST: validation of the Measure of Ovarian Symptoms and Treatment, a patient-reported outcome measure of symptom burden and impact of chemotherapy in recurrent ovarian cancer. Qual Life Res. 2018 Jan;27(1):59-74 King MT, Stockler MR, Butow P, O’Connell R, Voysey M, Oza AM, Gillies K, Donovan HS, Mercieca-Bebber R, Martyn J, Sjoquist K. Development of the measure of ovarian symptoms and treatment concerns: aiming for optimal measurement of patient-reported symptom benefit with chemotherapy for symptomatic ovarian cancer. International Journal of Gynecologic Cancer. 2014 Jun 1;24(5). |
PubliclYes available | Unknown | https://gcigtrials.org/resources/measure-ovarian-symptoms-and-treatment-most | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer, Ovarian | National Comprehensive Cancer Network Functional Assessment of Cancer Therapy - Ovarian Symptom Index | NFOSI-18 | USA | 2011 | To measure high priority symptoms/quality of life concerns in patients with advanced ovarian cancer. | 18 | No specific domains/dimensions identified | Yes | Jensen SE, Rosenbloom SK, Beaumont JL, Abernethy A, Jacobsen PB, Syrjala K, Cella D. A new index of priority symptoms in advanced ovarian cancer. Gynecol Oncol. 2011 Feb;120(2):214-9 | Yes | Unknown | https://www.facit.org/ | https://www.facit.org/measures/nfosi-18 | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer, Palliative care | Edmonton Symptom Assessment System | ESAS | Canada | 1991 | To assist in the assessment of nine common symptoms in palliative care patients. | 10 | Pain; Activity; Nausea; Depression; Anxiety; Drowsiness; Appetite; Sensation of well-being | Yes | Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. Journal of palliative care. 1991 Jun;7(2):6-9. Chang VT, Hwang SS, Feuerman M. Validation of the Edmonton symptom assessment scale. Cancer: Interdisciplinary International Journal of the American Cancer Society. 2000 May 1;88(9):2164-71. Hui D, Bruera E. The Edmonton Symptom Assessment System 25 years later: past, present, and future developments. Journal of pain and symptom management. 2017 Mar 1;53(3):630-43. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. Journal of palliative care. 1991 Jun;7(2):6-9. |
PubliclYes available | Unknown | https://www.albertahealthservices.ca/assets/info/peolc/if-peolc-ed-esasr-admin-manual.pdf | https://www.albertahealthservices.ca/frm-07903.pdf | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer, Palliative care | Needs Assessment For Advanced Cancer Patients | NA-ACP | Australia | 2005 | To assess the perceived needs of patients with advanced, incurable cancer. | 89 | 7 | Medical communication/information; Psychological/emotional; Daily living; Financial; Symptom; Spiritual; Social | Yes | Rainbird KJ, Perkins JJ, Sanson‐Fisher RW. The Needs Assessment for Advanced Cancer Patients (NA‐ACP): a measure of the perceived needs of patients with advanced, incurable cancer. A study of validity, reliability and acceptability. Psycho‐Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer. 2005 Apr;14(4):297-306. | No information | Unknown | K.J. Rainbird, 1241 Mandurah Road, Baldivis, WesternAustralia 6171, Australia. E-mail: rainbird@eftel.com | Nil | Yes | Rimmer, B., Crowe, L., Todd, A., and Sharp, L. Assessing unmet needs in advanced cancer patients: a systematic review of the development, content, and quality of available instruments. Journal of Cancer Survivorship. 2022;16(5);960-975 |
| Cancer | Cancer, Pancreatic | Pancreatic Cancer Disease Impact | PACADI | Norway | 2013 | To measure impact of pancreatic cancer (PC) | 8 | 8 | Pain/discomfort; Fatigue; Anxiety; Bowel and/or digestive problems; Loss of appetite; Dry mouth; Itchiness; Nausea | Yes | Heiberg T, Nordby T, Kvien TK, Buanes T. Development and preliminary validation of the pancreatic cancer disease impact score. Supportive Care in Cancer. 2013 Jun;21:1677-84. Heiberg T, Baekelandt B, Kvien TK, Buanes T. Psychometric performance of the PAncreatic CAncer disease impact (PACADI) score. Pancreatology. 2019 Oct 1;19(7):971-8. |
No information | Unknown | Turid Heiberg, Turid.Heiberg@ldh.no | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, patients receiving chemotherapy | Comprehensive Score For Financial Toxicity | COST | USA | 2014 | To quantitatively measure cancer patient's experience related to financial distress. | 11 | 5 | Resources; Affect; Financial; Family; Coping | Yes | De Souza JA, Yap BJ, Hlubocky FJ, Wroblewski K, Ratain MJ, Cella D, Daugherty CK. The development of a financial toxicity patient‐reported outcome in cancer: the COST measure. Cancer. 2014 Oct 15;120(20):3245-53. | Yes | Unknown | https://www.facit.org/measures/facit-cost | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Prostate | Expanded Prostate Cancer Index Composite for Clinical Practice | EPIC-CP | USA | 2011 | To measure urinary incontinence, urinary irritation, bowel, sexual, and hormonal Health Related Quality of Life domains in patients with prostate cancer in the clinical setting at the point of care. | 16 | 5 | Urinary incontinence; Urinary irritation/obstruction; Bowel; Sexual; Vitality/hormonal | Yes | Chang P, Szymanski KM, Dunn RL, Chipman JJ, Litwin MS, Nguyen PL, Sweeney CJ, Cook R, Wagner AA, DeWolf WC, Bubley GJ, Funches R, Aronovitz JA, Wei JT, Sanda MG. Expanded prostate cancer index composite for clinical practice: development and validation of a practical health related quality of life instrument for use in the routine clinical care of patients with prostate cancer. J Urol. 2011 Sep;186(3):865-72 | No information | Unknown | Peter Chang, Division of Urology, Department of Surgery, Beth Israel Deaconess Medical Center, Boston, Massachusetts 02215, USA. | http://www.bidmc.org/epic | Yes | Rnic K, Linden W, Tudor I, Pullmer R, Vodermaier A. Measuring symptoms in localized prostate cancer: a systematic review of assessment instruments. Prostate cancer and prostatic diseases. 2013 Jun;16(2):111-22. |
| Cancer | Cancer, Prostate | Expanded Prostate Index Composite | EPIC | USA | 2000 | To assess health-related quality of life in men with prostate cancer. | 50 | 4 | Urinary domain; Bowel domain; Sexual domain; Hormonal domain | Yes | Wei JT, Dunn RL, Litwin MS, Sandler HM, Sanda MG. Development and validation of the expanded prostate cancer index composite (EPIC) for comprehensive assessment of health-related quality of life in men with prostate cancer. Urology. 2000 Dec 1;56(6):899-905. | Yes | Unknown | https://medicine.umich.edu/dept/urology/research/epic | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Prostate | Memorial Anxiety Scale for Prostate Cancer | MAX-PC | USA | 2003 | To facilitate the identification and assessment of men with prostate cancer-related anxiety. | 18 | 3 | Prostate Cancer Anxiety; PSA Anxiety; Fear of Recurrence | Yes | Roth AJ, Rosenfeld B, Kornblith AB, Gibson C, Scher HI, Curley-Smart T, Holland JC, Breitbart W. The memorial anxiety scale for prostate cancer: validation of a new scale to measure anxiety in men with with prostate cancer. Cancer. 2003 Jun 1;97(11):2910-8. Roth A, Nelson CJ, Rosenfeld B, Warshowski A, O'shea N, Scher H, Holland JC, Slovin S, Curley-Smart T, Reynolds T, Breitbart W. Assessing anxiety in men with prostate cancer: further data on the reliability and validity of the Memorial Anxiety Scale for Prostate Cancer (MAX–PC). Psychosomatics. 2006 Jul 1;47(4):340-7. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/memorial-anxiety-scale-for-prostate-cancer | Nil | Yes | Thewes B, Butow P, Zachariae R, Christensen S, Simard S, Gotay C. Fear of cancer recurrence: a systematic literature review of self‐report measures. Psycho‐oncology. 2012 Jun;21(6):571-87. |
| Cancer | Cancer, Prostate | Sexual Minority and Prostate Cancer Scale | SMACS | USA | 2022 | To assess sexual functioning among sexual minority men with prostate cancer. | 22 | 4 | Sexual satisfaction; Sexual confidence; Frequency of sexual problems; Urinary incontinence in sex | Yes | Polter EJ, Kohli N, Rosser BS, Talley KM, Wheldon CW, Hoefer CJ, Wright M, Haggart R, Mitteldorf D, Kilian G, Konety BR. Creation and psychometric validation of the Sexual Minorities and Prostate Cancer Scale (SMACS) in sexual minority patients-the Restore-2 study. The journal of sexual medicine. 2022 Mar;19(3):529-40. | No information | Unknown | B.R. Simon Rosser, PhD, MPH, Division of Epidemiology and Community Health, University of Minnesota, School of Public Health, Minneapolis, MN, USA. Tel: 612-356-1711; Fax: 612-624-0315. Rosser@umn.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Quality of life | EORTC Quality of Life Questionnaire - Elderly Cancer Patients Module | QLQ-ELD-14 | UK | 2010 | To assess health-related quality of life in patients with cancer aged 70 years and above; To be used in conjunction with the EORTC QLQ-C30. | 14 | 5 | Mobility; Worries about others; Future worries; Maintaining purpose; Illness burden | Yes | Johnson C, Fitzsimmons D, Gilbert J, Arrarras JI, Hammerlid E, Bredart A, Ozmen M, Dilektasli E, Coolbrandt A, Kenis C, Young T, Chow E, Venkitaraman R, Howse F, George S, O'Connor S, Yadegarfar G; EORTC Quality of Life Group. Development of the European Organisation for Research and Treatment of Cancer quality of life questionnaire module for older people with cancer: The EORTC QLQ-ELD15. Eur J Cancer. 2010 Aug;46(12):2242-52. Wheelwright S, Darlington AS, Fitzsimmons D, Fayers P, Arraras JI, Bonnetain F, Brain E, Bredart A, Chie WC, Giesinger J, Hammerlid E, O'Connor SJ, Oerlemans S, Pallis A, Reed M, Singhal N, Vassiliou V, Young T, Johnson C. International validation of the EORTC QLQ-ELD14 questionnaire for assessment of health-related quality of life elderly patients with cancer. Br J Cancer. 2013 Aug 20;109(4):852-8. |
Yes | Unknown | https://qol.eortc.org/questionnaire/qlq-eld14/ | Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Quality of life | Functional Assessment of Cancer Therapy - Leukemia | FACT-Leu | USA | 2012 | To measure the health-related quality of life of patients with acute and chronic leukemia. | 44 | 5 | Physical wellbeing; Social/family wellbeing; Emotional wellbeing; Functional well-being; Leu subscale | Yes | Cella D, Jensen SE, Webster K, Hongyan D, Lai JS, Rosen S, Tallman MS, Yount S. Measuring health-related quality of life in leukemia: the Functional Assessment of Cancer Therapy--Leukemia (FACT-Leu) questionnaire. Value Health. 2012 Dec;15(8):1051-8 | PubliclYes available | Unknown | https://www.facit.org/measures/fact-leu | https://www.facit.org/measures/fact-leu | Yes | Bryant AL, Walton A, Shaw-Kokot J, Mayer DK, Reeve BB. A systematic review of psychometric properties of health-related quality-of-life and symptom instruments in adult acute leukemia survivors. Cancer nursing. 2016 Sep 1;39(5):375-82. |
| Cancer | Cancer, Quality of life | Functional Assessment of Cancer Therapy-Bladder Cancer | FACT-Bl | USA | 2019 | To assess health-related quality of life in patients with bladder cancer. | 39 | 5 | Physical wellbeing; Social/family wellbeing; Emotional wellbeing; Functional well-being; Bladder cancer subscale | Yes | Degboe A, Ivanescu C, Rohay JM, Turner RR, Cella D. Validity and performance of the Functional Assessment of Cancer Therapy-Bladder (FACT-Bl) among advanced urothelial cancer patients. Support Care Cancer. 2019 Nov;27(11):4189-4198 | PubliclYes available | Unknown | https://www.facit.org/measures/fact-bl | https://www.facit.org/measures/fact-bl | Yes | Rutherford C, Patel MI, Tait MA, Smith DP, Costa DS, King MT. Assessment of content validity for patient-reported outcome measures used in patients with non-muscle invasive bladder cancer: a systematic review. Supportive Care in Cancer. 2018 Apr;26:1061-76. |
| Cancer | Cancer, Quality of life | Functional Assessment of Cancer Therapy-Breast Cancer | FACT-B | USA | 1997 | To measure multidimensional quality of life in patients with breast cancer. | 44 | 5 | Physical wellbeing; Social/family wellbeing; Emotional wellbeing; Functional well-being; Breast cancer subscale | Yes | Brady MJ, Cella DF, Mo F, Bonomi AE, Tulsky DS, Lloyd SR, Deasy S, Cobleigh M, Shiomoto G. Reliability and validity of the Functional Assessment of Cancer Therapy-Breast quality-of-life instrument. J Clin Oncol. 1997 Mar;15(3):974-86 | PubliclYes available | Unknown | https://www.facit.org/measures/fact-b | https://www.facit.org/measures/fact-b | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Quality of life | Functional Assessment of Cancer Therapy-Breast Symptom Index | FBSI | UK | 2005 | To measure high priority symptoms/quality of life concerns in patients with breast cancer. | 6 | No specific domains/dimensions identified | Yes | Yost KJ, Yount SE, Eton DT, Silberman C, Broughton-Heyes A, Cella D. Validation of the Functional Assessment of Cancer Therapy-Breast Symptom Index (FBSI). Breast Cancer Res Treat. 2005 Apr;90(3):295-8 | PubliclYes available | Unknown | https://www.facit.org/measures/fbsi | https://www.facit.org/measures/fbsi | Yes | Salas M, Mordin M, Castro C, Islam Z, Tu N, Hackshaw MD. Health-related quality of life in women with breast cancer: a review of measures. BMC cancer. 2022 Jan 15;22(1):66. | |
| Cancer | Cancer, Quality of life | Functional Assessment of Cancer Therapy-Melanoma | FACT-M | USA | 2008 | To assess and identify unique concerns of patients with melanoma. | 51 | 5 | Physical wellbeing; Social/family wellbeing; Emotional wellbeing; Functional well-being; Melanoma subscale | Yes | Cormier JN, Davidson L, Xing Y, Webster K, Cella D. Measuring quality of life in patients with melanoma: development of the FACT-melanoma subscale. The journal of supportive oncology. 2005 Mar 1;3(2):139-45. Cormier JN, Ross MI, Gershenwald JE, Lee JE, Mansfield PF, Camacho LH, Kim K, Webster K, Cella D, Palmer JL. Prospective assessment of the reliability, validity, and sensitivity to change of the Functional Assessment of Cancer Therapy‐Melanoma questionnaire. Cancer. 2008 May 15;112(10):2249-57. |
PubliclYes available | Unknown | https://www.facit.org/measures/fact-m | https://www.facit.org/measures/fact-m | Yes | Chernyshov PV, Lallas A, Tomas‐Aragones L, Arenbergerova M, Samimi M, Manolache L, Svensson A, Marron SE, Sampogna F, Spillekom‐vanKoulil S, Bewley A. Quality of life measurement in skin cancer patients: literature review and position paper of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes, Melanoma and Non‐Melanoma Skin Cancer. Journal of the European Academy of Dermatology and Venereology. 2019 May;33(5):816-27. Reinhardt ME, Sun T, Pan CX, Schmults CD, Lee EH, Waldman AB. A systematic review of patient-reported outcome measures for advanced skin cancer patients. Archives of Dermatological Research. 2023 Aug;315(6):1473-80. |
| Cancer | Cancer, Quality of life | Functional Assessment of Cancer Therapy-Prostate | FACT-P | USA | 1997 | To assess quality of life in patients with prostate cancer. | 39 | 5 | Physical wellbeing; Social/family wellbeing; Emotional wellbeing; Functional well-being; Prostate cancer subscale | Yes | Esper P, Mo F, Chodak G et al. Measuring quality of life in men with prostate cancer using the functional assessment of cancer therapy-prostate instrument. Urology. 1997;50:920-928 | PubliclYes available | Unknown | https://www.facit.org/measures/fact-p | https://www.facit.org/measures/fact-p | Yes | Protopapa E, van der Meulen J, Moore CM, Smith SC. Patient‐reported outcome (PRO) questionnaires for men who have radical surgery for prostate cancer: a conceptual review of existing instruments. BJU international. 2017 Oct;120(4):468-81. Ratti MM, Gandaglia G, Sisca ES, Derevianko A, Alleva E, Beyer K, Moss C, Barletta F, Scuderi S, Omar MI, MacLennan S. A systematic review to evaluate patient-reported outcome measures (PROMs) for metastatic prostate cancer according to the Consensus-Based Standard for the Selection of Health Measurement Instruments (COSMIN) methodology. Cancers. 2022 Oct 19;14(20):5120. |
| Cancer | Cancer, Quality of life | Lansky Play-Performance Scale for Children | PPSC | USA | 1987 | To assess the quality and type of usual child's play activity/ the performance of status of children. | 1 | No specific domains/dimensions identified | Lansky LL, List MA, Lansky SB, Cohen ME, Sinks LF. Toward the development of a play performance scale for children (PPSC). Cancer. 1985 Oct 1;56(7 Suppl):1837-40. Lansky SB, List MA, Lansky LL, Ritter‐Sterr C, Miller DR. The measurement of performance in childhood cancer patients. Cancer. 1987 Oct 1;60(7):1651-6. |
PubliclYes available | Unknown | https://www.pediatriconcall.com/calculators/lansky-play-performance-scale-pediatric-functional-status-calculator | None identified in March 2025 | None identified in March 2025 | |||
| Cancer | Cancer, Quality of life | Quality of Life Family Version | QOL Family Version | USA | 1991 | To assess the quality of life of a family member caring for a patient with cancer. | 37 | 4 | Physical; Psychological; Social; Spiritual | Yes | Ferrell BR, Ferrell B, Rhiner M, Grant M. Family Factors Influencing Cancer Pain Management. Postgrad Med J, 1991; 67(Suppl. 2) S64-69. | Yes | Unknown | B.R Ferrell, City of Hope National Medical Center, Duarte, California 91010 | https://www.cityofhope.org/sites/www/files/2022-06/1431763601545-qol-family%20%282%29.pdf | Yes | Shah R, Ali FM, Finlay AY, Salek MS. Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature. Health and quality of life outcomes. 2021 Dec;19:1-35. |
| Cancer | Cancer, Sarcoma | Toronto Extremity Salvage Score | TESS | Canada | 1996 | To assess physical function of patients following surgery for musculoskeletal tumours. | 30 | No specific domains/dimensions identified | Yes | Davis AM, Wright JG, Williams JI, Bombardier C, Griffin A, Bell RS. Development of a measure of physical function for patients with bone and soft tissue sarcoma. Quality of Life Research. 1996 Oct;5(5):508-16. Ketola H, Kask G, Barner-Rasmussen I, Tukiainen E, Blomqvist C, Laitinen MK, Kautiainen H, Kiiski J, Repo JP. Measuring functional outcome in upper extremity soft-tissue sarcoma: Validation of the Toronto extremity salvage score and the QuickDASH patient-reported outcome instruments. J Plast Reconstr Aesthet Surg. 2022 May;75(5):1543-1550. doi: 10.1016/j.bjps.2021.11.081. Epub 2021 Dec 1. PMID: 34996722. |
No information | Unknown | A. M. Davis, University Musculoskeletal Oncology Unit, University of Toronto, Toronto, Canada, | Nil | None identified in March 2025 | None identified in March 2025 | |
| Cancer | Cancer, Skin | FACE-Q - Skin Cancer Module | FACE-Q | USA | 2018 | Developed for patients undergoing surgical procedures for facial skin cancer. | 41 | 5 | Facial; Scars; Appearance distress; Cancer worry; Sun protection behaviour |
Yes | Cowen EA, Veldhuizen IJ, Klassen AF, Cano SJ, Dusza SW, Nehal KS, Pusic AL, Lee EH. Sun protection behaviour checklist for targeted counselling in skin cancer patients. Australas J Dermatol. 2022 Apr 23. Lee EH, Klassen AF, Cano SJ, Nehal KS, Pusic AL. FACE‐Q Skin Cancer Module for measuring patient‐reported outcomes following facial skin cancer surgery. British Journal of Dermatology. 2018 Jul 1;179(1):88-94. |
Yes | Unknown | https://qportfolio.org/face-q/skin-cancer/ |
Nil | None identified in March 2025 | None identified in March 2025 |
| Cancer | Cancer, Spine | Spine Oncology Study Group-Outcomes Questionnaire 2.0 | SOSGOQ2.0 | Switzerland | 2018 | To evaluate health-related quality of life in patients with spinal metastases. | 27 | 4 | Physical function; Social function; Mental health; Pain | Yes | Versteeg AL, Sahgal A, Rhines LD, Sciubba DM, Schuster JM, Weber MH, Varga PP, Boriani S, Bettegowda C, Fehlings MG, Clarke MJ. Psychometric evaluation and adaptation of the Spine Oncology Study Group Outcomes Questionnaire to evaluate health‐related quality of life in patients with spinal metastases. Cancer. 2018 Apr 15;124(8):1828-38. | Yes | Unknown | Copyright information: © 2020 AO Foundation, AO Spine, Switzerland | https://media.aofoundation.org/spine/-/media/project/aocd/aospine/research/research-programs/ao-spine-knowledge-forum-tumor/aospine_patientreportedoutcometool_sosgoq2-0_epub.pdf?rev=25117c2749d64666a31a83dd4af8a051 | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Arrhythmia | Arrhythmia-Specific Questionnaire in Tachycardia and Arrhythmia symptom scale | ASTA | Sweden | 2012 | To assess symptom burden in patients with different forms of arrhythmias. |
10 | No specific domains/dimensions identified | Yes | Walfridsson U, Arestedt K, Stromberg A. Development and validation of a new Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA) with focus on symptom burden. Health Qual Life Outcomes. 2012 Apr 30;10:44. doi: 10.1186/1477-7525-10-44. PMID: 22545926; PMCID: PMC3430592. Walfridsson U, Walfridsson H, Middeldorp ME, Sanders P, Årestedt K. Validation of the English version of the arrhythmia-specific questionnaire in tachycardia and arrhythmia (ASTA): a Rasch evaluation study. Journal of Patient-Reported Outcomes. 2022 Aug 26;6(1):90. |
No information | Unknown | Ulla Walfridsson, Division of Nursing Science, Department of Medicine and Health Sciences, Linkping University, Department of Cardiology UHL, County Council of stergtland, Linkping, Sweden | Nil | Yes | Sale A, Yu J. Quality of life instruments in atrial fibrillation: a systematic review of measurement properties. Health and Quality of Life Outcomes. 2022 Oct 17;20(1):143. | |
| Cardiovascular | Atrial fibrillation | Anti-Clot Treatment Scale | ACTS | Canada; USA; UK | 2006 | To measure patient treatment satisfaction with anticoagulation treatment. | 15 | 9 | Reliability; Internal consistency; Inter-interviewer reproducibility; Validity; Ability to measure the concept; Ability to predict future outcomes; Ability to detect change; Interpretability; Responder definition | Yes | Cano SJ, Lamping DL, Bamber L, Smith S. The Anti-Clot Treatment Scale (ACTS) in clinical trials: cross-cultural validation in venous thromboembolism patients. Health and quality of life outcomes. 2012 Dec;10:1-1. | Yes | Unknown | Department of Clinical Neuroscience, Peninsula College of Medicine and Dentistry, Room N16 ITTC Building, Tamar Science Park, Davy Road, Plymouth, Devon PL6 8BX, UK, stefan.cano@pcmd.ac.uk, | Nil | Yes | Al-Ebrahim, S. Q., Harrison, J., Chen, T. F., & Mohammed, M. A. Cross-cultural adaptation and psychometric properties of patient-reported outcome measures in Arabic speaking countries: a scoping review. Research in Social and Administrative Pharmacy. 2023;19(7):989-1006. |
| Cardiovascular | Atrial fibrillation | Atrial Fibrillation Effect on QualiTy-of-Life Questionnaire | AFEQT | USA | 2010 | To assess the spectrum of health-related quality-of-life domains affected by Atrial fibrillation. | 20 | 4 | Symptoms; Daily activities; Treatment concern; Treatment satisfaction | Yes | Spertus J, Dorian P, Bubien R, Lewis S, Godejohn D, Reynolds MR, Lakkireddy DR, Wimmer AP, Bhandari A, Burk C. Development and validation of the Atrial Fibrillation Effect on QualiTy-of-Life (AFEQT) Questionnaire in patients with atrial fibrillation. Circ Arrhythm Electrophysiol. 2011 Feb;4(1):15-25 | Yes | Unknown | John Spertus, Mid America Heart Institute (J.S., A.P.W.), Kansas City, MO | Nil | Yes | Kotecha D, Ahmed A, Calvert M, Lencioni M, Terwee CB, Lane DA. Patient-reported outcomes for quality of life assessment in atrial fibrillation: a systematic review of measurement properties. PLoS One. 2016 Nov 1;11(11):e0165790. Sale A, Yu J. Quality of life instruments in atrial fibrillation: a systematic review of measurement properties. Health and Quality of Life Outcomes. 2022 Oct 17;20(1):143. |
| Cardiovascular | Atrial fibrillation | Atrial Fibrillation Impact Questionnaire | AFImpact | USA | 2017 | To measure the impact of atrial fibrillation. | 18 | 3 | Vitality; Emotional distress; Sleep | Yes | Coyne KS, Edvardsson N, Rydén A. Development and Validation of the AFImpact: An Atrial Fibrillation–Specific Measure of Patient-Reported Health-Related Quality of Life. Value in Health. 2017 Dec 1;20(10):1355-61. | Yes | Unknown | Coyne, Karin S. Outcomes Research, Evidera, Bethesda, MD, USA | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Atrial fibrillation | Duke Anticoagulation Satisfaction Scale | DASS | USA | 2004 | To measure quality of life and satisfaction with anticoagulation that can be generalised across models of medical care. | 25 | 2 | Negative impacts of anticoagulation; Positive impacts of anticoagulation | Yes | Samsa G, Matchar DB, Dolor RJ, Wiklund I, Hedner E, Wygant G, Hauch O, Marple CB, Edwards R. A new instrument for measuring anticoagulation-related quality of life: development and preliminary validation. Health and quality of life outcomes. 2004 Dec;2:1-1. | Yes | Unknown | Greg Samsa, Department of Biometry and Bioinformatics, Duke University Medical Center, Wachovia Plaza, Suite 220, 2200 West Main Street, Durham NC 27705, USA,- samsa001@mc.duke.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Cardiomyopathy | Hypertrophic Cardiomyopathy Symptom Questionnaire | HCMSQ | UK | 2022 | To measure symptoms and treatment benefit from the perspective of patients with Hypertrophic Cardiomyopathy. | 9 | 4 | Shortness of breath; Tiredness; Cardiovascular symptoms; Syncope | Yes | Reaney M, Allen V, Sehnert AJ, Fang L, Hagège AA, Naidu SS, Olivotto I. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ): A New Patient-Reported Outcome (PRO) Instrument. Pharmacoecon Open. 2022 Jul;6(4):563-574 | Yes | Unknown | Matthew Reaney, IQVIA, 3 Forbury Place, 23 Forbury Road, Reading, RG1 3JH, UK | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Cardiovascular disease; Mental health | Cardiac Depression Scale | CDS | Australia | 1993 | To accurately measure depressed mood (as 'adjustment disorder with depressed mood') and changes in depression for cardiac patients. | 26 | 2 | Yes | Hare DL, Davis CR. Cardiac Depression Scale: validation of a new depression scale for cardiac patients. Journal of psychosomatic research. 1996 Apr 1;40(4):379-86. Birks Y, Roebuck A, Thompson DR. A validation study of the Cardiac Depression Scale (CDS) in a UK population. British journal of health psychology. 2004 Feb;9(1):15-24. |
Yes | Unknown | Dr. Samia Toukhsati at samia.toukhsati@austing.org.au or Professor David Hare at david.hare@austin.org.au | Nil | Yes | Luan, L., Hu, H., & Li, S. C. A review of studies of quality of life for Chinese-speaking patients with ischemic heart disease. Value in health regional issues. 2018;15:82-90. | |
| Cardiovascular | Cardiovascular, general | Brief Resilience Scale | BRS | USA | 2008 | To assess the ability to bounce back or recover from stress. | 6 | No specific domains/dimensions identified | Yes | Smith BW, Dalen J, Wiggins K, Tooley E, Christopher P, Bernard J. The brief resilience scale: assessing the ability to bounce back. Int J Behav Med. 2008;15(3):194-200 | No information | Unknown | Bruce W. Smith, Ph.D., Department of Psychology, University of New Mexico, Albuquerque, NM 87131-1161. E-mail: bwsmith@unm.edu | Nil | Yes | Windle G, Bennett KM, Noyes J. A methodological review of resilience measurement scales. Health and quality of life outcomes. 2011 Dec;9:1-8. | |
| Cardiovascular | Cardiovascular, general | Pediatric Cardiac Quality of Life Inventory | PCQLI | USA | 2008 | To assess quality of life in survivors of congenital heart disease. | 28 | 4 | General health; Disease impact; Psychosocial impact; Emotional environment | Yes | Marino BS, Shera D, Wernovsky G, Tomlinson RS, Aguirre A, Gallagher M, Lee A, Cho CJ, Stern W, Davis L, Tong E, Teitel D, Mussatto K, Ghanayem N, Gleason M, Gaynor JW, Wray J, Helfaer MA, Shea JA. The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease. Qual Life Res. 2008 May;17(4):613-26. doi: 10.1007/s11136-008-9323-8. PMID: 18347927. | Yes | Unknown | Bradley S. Marino, Department of Pediatrics, Divisions of Cardiology and Critical Care Medicine, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, MLC 2003, 3333 Burnet Avenue, Cincinnati, OH, 45229, USA | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Coronary artery disease | Seattle Angina Questionnaire | SAQ | USA | 1995 | To quantify the physical and emotional effects of coronary artery disease. | 19 | 5 | Physical limitation; Angina stability; Angina frequency; Treatment satisfaction; Disease perception | Yes | Spertus JA, Winder JA, Dewhurst TA, Deyo RA, Prodzinski J, McDonnell M, Fihn SD. Development and evaluation of the Seattle Angina Questionnaire: a new functional status measure for coronary artery disease. Journal of the American College of Cardiology. 1995 Feb 1;25(2):333-41. | Yes | Unknown | Dr. John A. Spertus, Division of Cardiology, RG-22, University of Washington, Seattle, Washington 98195. | Nil | Yes | Thompson, D. R., Ski, C. F., Garside, J., & Astin, F. A review of health-related quality of life patient-reported outcome measures in cardiovascular nursing. European Journal of Cardiovascular Nursing. 2016;15(2):114-125. |
| Cardiovascular | Coronary disease | Coronary Revascularisation Outcome Questionnaire- Percutaneous Coronary Intervention (Post-Revascularisation) version 2 (CROQv2-PCI (Post-Revascularisation)) | CROQv2-PCI | UK | 2017 | To evaluate health outcomes and health-related quality of life before and after percutaneous coronary intervention. | 32 | 4 | Symptoms; Physical functioning; Psychosocial functioning; Cognitive functioning | Yes | Schroter SAB. Development and validation of a patient-based measure of outcome for coronary revascularisation. PhD thesis, London School of Hygiene & Tropical Medicine 2001 Schroter S, Miles R, Green S, Jackson M. Psychometric validation of the coronary revascularisation outcome questionnaire (CROQv2) in the context of the NHS coronary revascularisation PROMs pilot. BMJ open. 2017 Feb 1;7(2):e015915. |
Yes | Unknown | Sara Schroter, London School of Hygiene and Tropical Medicine, London, UK, sschroter@bmj.com | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Heart failure | Chronic Heart Failure Assessment Tool | CHAT | UK | 2008 | To reflect participants' beliefs about how chronic heart failure affects their health-related quality of life. | 30 | 7 | Physical ability; Emotional state; Self-perception; Relationships; Coping with symptoms; Maintaining social/lifestyle status; Cognitive aspects in respect to CHF | Yes | Dunderdale K, Thompson DR, Beer SF, Furze G, Miles JN. Development and validation of a patient-centered health-related quality-of-life measure: the Chronic Heart Failure Assessment Tool. Journal of Cardiovascular Nursing. 2008 Jul 1;23(4):364-70. | No information | Unknown | Karen Dunderdale, PhD, Cardiac Rehabilitation, Scunthorpe General Hospital, Scunthorpe DN15 7BH, United Kingdom (karen.dunderdale@nlg.nhs.uk). | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Heart failure | Chronic Heart Failure Questionnaire | CHFQ or CHQ | Canada | 1989 | To measure subjective aspects of health status in clinical trials in heart failure and specifically longitudinal change over time within patients. | 20 | 3 | Dyspnea; Fatigue; Emotional function | Yes | Guyatt GH, Nogradi S, Halcrow S, Singer J, Sullivan MJ, Fallen EL. Development and testing of a new measure of health status for clinical trials in heart failure. Journal of General Internal Medicine. 1989 Mar;4(2):101-7. Guyatt GH, Thompson PJ, Berman LB, Sullivan MJ, Townsend M, Jones NL, Pugsley SO. How should we measure function in patients with chronic heart and lung disease?. Journal of chronic diseases. 1985 Jan 1;38(6):517-24. |
Yes | Unknown | http://milo.mcmaster.ca/questionnaires/questionnaires | Nil | Yes | Thompson, D. R., Ski, C. F., Garside, J., & Astin, F. A review of health-related quality of life patient-reported outcome measures in cardiovascular nursing. European Journal of Cardiovascular Nursing. 2016;15(2):114-125. |
| Cardiovascular | Heart failure | European Heart Failure Self-Care Behaviour Scale | EHFScBs | The Netherlands | 2003 | To assess self-care behaviours related to heart failure. | 12 | 3 | Complying with regimen; Asking for help; Adapting activities | Yes | Jaarsma T, Strömberg A, Mårtensson J, Dracup K. Development and testing of the European heart failure self‐care behaviour scale. European Journal of Heart Failure. 2003 Jun;5(3):363-70. Jaarsma T, Årestedt KF, Mårtensson J, Dracup K, Strömberg A. The European Heart Failure Self‐care Behaviour scale revised into a nine‐item scale (EHFScB‐9): a reliable and valid international instrument. European journal of heart failure. 2009 Jan;11(1):99-105. |
No information | Unknown | T. Jaarsma, Department of Cardiology, University Hospital Groningen, P.O. Box 30001, 9700 RB, Groningen, The Netherlands, Tel.: +31–50–3613429; fax: +31–50–3614391. E-mail address: t.jaarsma@thorax.azg.nl | Nil | ||
| Cardiovascular | Heart failure | Heart Failure Somatic Awareness Scale | HFSAS | USA | 2006 | To measure awareness of and distress secondary to heart failure symptoms. | 12 | 4 | Acute heart failure symptoms; Symptoms related to peripheral edema; Symptoms associated with myocardial infarction; Early symptoms of heart failure decompensation | Yes | Jurgens CY, Fain JA, Riegel B. Psychometric testing of the heart failure somatic awareness scale. J Cardiovasc Nurs. 2006 Mar-Apr;21(2):95-102. doi: 10.1097/00005082-200603000-00004. PMID: 16601525. | No information | Unknown | Corrine Y. Jurgens, PhD, RN, CS, ANP Clinical Associate Professor, School of Nursing, Stony Brook University, Stony Brook, NY. | Nil | Yes | Zimmerman L, Pozehl B, Vuckovic K, Barnason S, Schulz P, Seo Y, Ryan CJ, Zerwic JJ, DeVon HA. Selecting symptom instruments for cardiovascular populations. Heart & Lung. 2016 Nov 1;45(6):475-96. |
| Cardiovascular | Heart failure | Kansas City Cardiomyopathy Questionnaire | KCCQ | USA | 2000 | To provide a better description of health related quality of life in patients with Congestive Heart Failure. | 23 | 7 | Physical limitations; Symptoms frequency; Severity; Change over time; Self-efficacy and knowledge; Social interference; Quality of Life | Yes | Green CP, Porter CB, Bresnahan DR, Spertus JA. Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure. Journal of the American College of Cardiology. 2000 Apr;35(5):1245-55. | Yes | Unknown | C.Patrick Green MD, Section of Cardiology, Department of Medicine, University of Missouri, Kansas City, Kansas City, Missouri, USA or Dr. John A. Spertus, Mid America Heart Institute/University of Missouri—Kansas City, 4401 Wornall Road, Kansas City, Missouri 64111, jspertus@cctr.umkc.edu | Nil | ||
| Cardiovascular | Heart failure | MacNew Heart Disease Health-related Quality of Life Questionnaire | MacNew | Australia | 1996 | To assess health-related quality of life in patients with heart diseases. | 27 | 3 | Physical limitations; Emotional function; Social function | Yes | Valenti L, Lim L, Heller RF, Knapp.J. An improved questionnaire for assessing quality of life after myocardial infarction. Qual Life Res 1996;5:151-161. Höfer S, Lim L, Guyatt G, Oldridge N. The MacNew Heart Disease health-related quality of life instrument: a summary. Health and quality of life outcomes. 2004 Dec;2:1-8. |
Yes | Unknown | https://www.macnew.org/information | Nil | Yes | Silva SA, Passos SR, Carballo MT, Figueiró M. Quality of life assessment after acute coronary syndrome: systematic review. Arquivos Brasileiros de Cardiologia. 2011;97:526-40. Thompson DR, Ski CF, Garside J, Astin F. A review of health-related quality of life patient-reported outcome measures in cardiovascular nursing. European Journal of Cardiovascular Nursing. 2016 Apr 1;15(2):114-25. |
| Cardiovascular | Heart failure | Minnesota Living With Heart Failure | MLHFQ | USA | 1986 | To systematically and comprehensively assess the patient's perceptions of the effects of heart failure and its treatment on his or her daily life. | 21 | 2 | Physical; Emotional | Yes | Rector TS, Kubo SH, Cohn JN. Patients' Self-Assessment of Their Congestive Heart Failure: Content, Reliability and Validity of a New Measure, the Minnesota Living With Heart Failure Questionnaire. Heart Failure 1987;3:198-209. Rector TS, Cohn JN. Assessment of patient outcome with the Minnesota Living with Heart Failure questionnaire: reliability and validity during a randomized, double-blind, placebo-controlled trial of pimobendan. American heart journal. 1992 Oct 1;124(4):1017-25. |
Yes | Unknown | Thomas S Rector, PhD Email: mlhfq@umn.edu Technology Commercialization University of Minnesota 200 Oak St. SE, Suite 226 Minneapolis, MN 55455 USA | Nil | Yes | Thompson, D. R., Ski, C. F., Garside, J., & Astin, F. A review of health-related quality of life patient-reported outcome measures in cardiovascular nursing. European Journal of Cardiovascular Nursing. 2016;15(2):114-125. |
| Cardiovascular | Heart failure | Self-care of Heart Failure Index v7.2 | SCHFI v7.2 | USA | 2019 | A measure of self-care defined as a naturalistic decision making process involving the choice of behaviours that maintain physiologic stability (maintenance) and the response to symptoms when they occur (management). | 29 | 3 | Self-care maintenance; Symptom perception; Self-Care management | Yes | Riegel B, Carlson B, Moser DK, Sebern M, Hicks FD, Roland V. Psychometric testing of the self-care of heart failure index. J Card Fail. 2004 Aug;10(4):350-60. Riegel B, Barbaranelli C, Carlson B, Sethares KA, Daus M, Moser DK, Miller J, Osokpo OH, Lee S, Brown S, Vellone E. Psychometric testing of the revised self-care of heart failure index. Journal of Cardiovascular Nursing. 2019 Mar 1;34(2):183-92. |
No information | Unknown | Barbara Riegel, School of Nursing, University of Pennsylvania, Philadelphia. | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Ischemic heart disease | Heart Quality Of Life | HeartQoL | USA | 2014 | To assess quality of life in patients with ischemic heart disease. | 14 | 2 | Physical; Emotional | Yes | Oldridge N, Höfer S, McGee H, Conroy R, Doyle F, Saner H, HeartQoL Project Investigators). The HeartQoL: Part I. Development of a new core health-related quality of life questionnaire for patients with ischemic heart disease. European journal of preventive cardiology. 2014 Jan;21(1):90-7. Oldridge N, Höfer S, McGee H, Conroy R, Doyle F, Saner H, HeartQoL Project Investigators). The HeartQoL: Part II. Validation of a new core health-related quality of life questionnaire for patients with ischemic heart disease. European journal of preventive cardiology. 2014 Jan;21(1):98-106. |
Yes | Unknown | Neil Oldridge Email: neilb@uwm.edu, School of Medicine and Public Health, University of Wisconsin, USA Aurora Cardiovascular Services, Aurora St. Luke’s Medical Center, USA Neil Oldridge, University of Wisconsin School of Medicine and Public Health and Aurora Cardiovascular Services, 6975 N. Elm Tree Rd, Glendale, WI 53217, USA | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Left ventricular dysfunction | Left Ventricular Dysfunction Questionnaire | LVD-36 or LVDQ | UK | 2000 | To assess the impact of left ventricular dysfunction daily life and well-being. | 36 | 4 | Validity; Clarity; Brevity; Ease of use | Yes | O'Leary CJ, Jones PW. The left ventricular dysfunction questionnaire (LVD-36): reliability, validity, and responsiveness. Heart. 2000 Jun 1;83(6):634-40. | No information | Unknown | C O'Leary, Division of Physiological Medicine, St George's Hospital Medical School, Cranmer Terrace, London SW17 0RE, UK. | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Peripheral arterial disorders | Peripheral Artery Disease Quality of Life Questionnaire | PADQOL | USA | 2012 | To assess the impact of peripheral artery disease on health-related quality of life. | 38 | 5 | Social relationships and interactions; Self-concept and feelings; Symptoms and limitations in physical functioning; Fear and uncertainty; Positive adaptation | Yes | Treat-Jacobson D, Halverson SL, Ratchford A, Regensteiner JG, Lindquist R, Hirsch AT. A patient-derived perspective of health-related quality of life with peripheral arterial disease. J Nurs Scholarsh. 2002;34(1):55-60. Treat-Jacobson D, Lindquist RA, Witt DR, Kirk LN, Schorr EN, Bronas UG, Davey CS, Regensteiner JG. The PADQOL: development and validation of a PAD-specific quality of life questionnaire. Vascular Medicine. 2012 Dec;17(6):405-15. |
Yes | Unknown | https://license.umn.edu/product/peripheral-artery-disease-quality-of-li… | Nil | Yes | Conijn AP, Jens S, Terwee CB, Breek JC, Koelemay MJ. Assessing the quality of available patient reported outcome measures for intermittent claudication: a systematic review using the COSMIN checklist. European Journal of Vascular and Endovascular Surgery. 2015 Mar 1;49(3):316-34. Poku E, Duncan R, Keetharuth A, Essat M, Phillips P, Woods HB, Palfreyman S, Jones G, Kaltenthaler E, Michaels J. Patient-reported outcome measures in patients with peripheral arterial disease: a systematic review of psychometric properties. Health and quality of life outcomes. 2016 Dec;14:1-4. |
| Cardiovascular | Peripheral arterial disorders | Peripheral Artery Questionnaire | PAQ | USA | 2004 | To quantify patients' physical limitations, symptoms, social function, treatment satisfaction, and quality of life in patients with Peripheral Arterial Disease. | 20 | 7 | Disease-specific fashion; Physical functioning; Symptom stability; Frequency; Patient satisfaction; Quality of life; Social role functions | Yes | Spertus J, Jones P, Poler S, Rocha-Singh K. The peripheral artery questionnaire: a new disease-specific health status measure for patients with peripheral arterial disease. American heart journal. 2004 Feb 1;147(2):301-8. | Yes | Unknown | John Spertus, MD, MPH, Cardiovascular Education and Outcomes Research, 4401 Wornall Road, Kansas City, MO 64111, USA. spertusj@umkc.edu |
Nil | Yes | Goodney, P., Shah, S., Hu, Y. D., Suckow, B., Kinlay, S., Armstrong, D. G., ... & Conte, M. S. A systematic review of patient-reported outcome measures patients with chronic limb-threatening ischemia. Journal of vascular surgery. 2022;75(5):1762-1775. |
| Cardiovascular | Peripheral arterial disorders, lower limb ischemia | Vascular Quality of Life questionnaire | VascuQoL | England | 2001 | To measure the quality of life in patients with lower limb ischemia. | 25 | 5 | Pain; Symptoms; Activities; Social; Emotional | Yes | Morgan MB, Crayford T, Murrin B, Fraser SC. Developing the Vascular Quality of Life Questionnaire: a new disease-specific quality of life measure for use in lower limb ischemia. J Vasc Surg. 2001 Apr;33(4):679-87 | Yes | Unknown | Mark Morgan, Vascular Surgical Unit, King's College Hospital. London, United Kingdom | Nil | Yes | Conijn AP, Jens S, Terwee CB, Breek JC, Koelemay MJ. Assessing the quality of available patient reported outcome measures for intermittent claudication: a systematic review using the COSMIN checklist. European Journal of Vascular and Endovascular Surgery. 2015 Mar 1;49(3):316-34. Poku E, Duncan R, Keetharuth A, Essat M, Phillips P, Woods HB, Palfreyman S, Jones G, Kaltenthaler E, Michaels J. Patient-reported outcome measures in patients with peripheral arterial disease: a systematic review of psychometric properties. Health and quality of life outcomes. 2016 Dec;14:1-4. |
| Cardiovascular | Pulmonary hypertension | Cambridge Pulmonary Hypertension Outcome Review | CAMPHOR | UK | 2006 | To assess impairment, functioning and needs based quality of life of patients with pulmonary hypertension. | 40 | 3 | Symptoms; Functioning; Quality of life | Yes | McKenna SP, Doughty N, Meads DM, Doward LC, Pepke-Zaba J. The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR): a measure of health-related quality of life and quality of life for patients with pulmonary hypertension. Qual Life Res. 2006 Feb;15(1):103-15. Twiss J, McKenna SP, Graham J, Swetz K, Sloan J, Gomberg-Maitland M. Applying Rasch analysis to evaluate measurement equivalence of different administration formats of the Activity Limitation scale of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR). Health and Quality of Life Outcomes. 2016 Dec;14:1-8. |
Yes | Unknown | S.P. McKenna' E-mail: smckenna@galen-research.com, Galen Research, Enterprise House: Manchester Science Park, Lloyd Street North, Manchester, M15 6SE UK | Nil | Yes | Rose, S. W., Highland, K. B., & Kelkar, A. A. Clinical utility of patient-reported outcome instruments in the management of pulmonary hypertension: a systematic review. Heart Failure. 2024;12(2):366-376. |
| Cardiovascular | Stroke | Aphasia Communication Outcome Measure | ACOM | USA | 2021 | Measure of communicative functioning developed for persons with stroke-induced aphasia. | 59 | 3 | Talking; Comprehension; Writing | Yes | Hula WD, Doyle PJ. The Aphasia Communication Outcome Measure: Motivation, Development, Validity Evidence, and Interpretation of Change Scores. Semin Speech Lang. 2021 Jun;42(3):211-224. doi: 10.1055/s-0041-1730906. Epub 2021 Jul 14. PMID: 34261164. | No information | Unknown | William D. Hula, Ph.D., CCC-SLP, VA Pittsburgh Healthcare System, University Drive C, 112SP-U, Pittsburgh, PA 15240, william.hula@va.gov | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Stroke | Communication Outcome After Stroke | COAST | UK | 2008 | To assess self-perceived communication effectiveness for people with stroke. | 20 | 3 | Everyday communication; Opinions of confidence and improvement in communication since stroke; Impact of functional communication on people’s lives | Yes | Long AF, Hesketh A, Paszek G, Booth M, Bowen A. Development of a reliable self-report outcome measure for pragmatic trials of communication therapy following stroke: the Communication Outcome after Stroke (COAST) scale. Clinical Rehabilitation. 2008 Dec;22(12):1083-94. | Yes | Unknown | https://www.uominnovationfactory.com/expressip/expressip-healthcare/coa… | Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Stroke | Communicative Effectiveness Index | CETI | Canada | 1989 | A measure of change in functional communication ability. | 16 | No specific domains/dimensions identified | Yes | Lomas J, Pickard L, Bester S, Elbard H, Finlayson A, Zoghaib C. The communicative effectiveness index: Development and psychometric evaluation of a functional communication measure for adult aphasia. Journal of speech and hearing disorders. 1989 Feb;54(1):113-24. | No information | Unknown | https://everythingslp.wordpress.com/wp-content/uploads/2014/11/communication-effectiveness-index.pdf | None identified in March 2025 | None identified in March 2025 | ||
| Cardiovascular | Stroke | Patient Reported Evaluation Of Cognitive State | PRECiS | UK | 2014 | To assess perceived impact of cognitive problems from the unique perspective of stroke survivors. | 27 | 4 | Skills; Life; Mood; Self | Yes | Patchick EL, Horne M, Woodward‐Nutt K, Vail A, Bowen A. Development of a patient‐centred, patient‐reported outcome measure (PROM) for post‐stroke cognitive rehabilitation: qualitative interviews with stroke survivors to inform design and content. Health Expectations. 2015 Dec;18(6):3213-24. Patchick E, Vail A, Wood A, Bowen A. PRECiS (Patient Reported Evaluation of Cognitive State): psychometric evaluation of a new patient reported outcome measure of the impact of stroke. Clinical Rehabilitation. 2016 Dec;30(12):1229-41. |
No information | Unknown | emma.patchick@postgrad.manchester.ac.uk E-mail: emma.patchick@postgrad.manchester.ac.uk emma.patchick@postgrad.manchester.ac.uk |
Nil | None identified in March 2025 | None identified in March 2025 |
| Cardiovascular | Stroke | Southampton Stroke Self-Management Questionnaire | SSSMQ | UK | 2015 | To assess stroke survivor's perception of their self-management attitudes, skills, and behaviours. | 28 | No specific domains/dimensions identified | Yes | Boger EJ, Hankins M, Demain SH, Latter SM. Development and psychometric evaluation of a new patient-reported outcome measure for stroke self-management: The Southampton Stroke Self-Management Questionnaire (SSSMQ). Health and quality of life outcomes. 2015 Dec;13:1-9. | No information | Unknown | e.j.boger@soton.ac.uk | Nil | None identified in March 2025 | None identified in March 2025 | |
| Cardiovascular | Stroke | Stroke Aphasia Quality of Life-39 scale | SAQOL-39 | UK | 2003 | To measure the quality of life of people with stroke and aphasia. | 39 | 4 | Physical; Psychosocial; Communication; Energy | Yes | Hilari K, Byng S, Lamping DL, Smith SC. Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39): evaluation of acceptability, reliability, and validity. Stroke. 2003 Aug;34(8):1944-50. doi: 10.1161/01.STR.0000081987.46660.ED. Epub 2003 Jul 10. PMID: 12855827. | Yes | Unknown | Katerina Hilari, PhD, Department of Language and Communication Science, Institute of Health, City University, London, UK. | Nil | Yes | Zaramo TZ, Zelko I, Ragland D, Tunyi J, Kaur MN, Bajestani N, Lee CN, Chung KC, Mitchell KA. Can we do better at measuring patient-reported outcomes after cranioplasty? A systematic review. Neurosurgical Review. 2023 May 6;46(1):109. |
| Cardiovascular | Stroke | Stroke Impact Scale | SIS 3.0 | USA | 1999 | To detect consequences of stroke, especially mild to moderate stroke on quality of life. | 64 | 8 | Strength; Hand function; ADL/IADL; Mobility; Communication; Emotion; Memory and thinking; Participation | Yes | Duncan PW, Wallace D, Lai SM, Johnson D, Embretson S, Laster LJ. The stroke impact scale version 2.0: evaluation of reliability, validity, and sensitivity to change. Stroke. 1999 Oct;30(10):2131-40. Duncan PW, Lai SM, Tyler D, Perera S, Reker DM, Studenski S. Evaluation of proxy responses to the Stroke Impact Scale. Stroke. 2002 Nov 1;33(11):2593-9. Duncan PW, Bode RK, Lai SM, Perera S, Glycine Antagonist in Neuroprotection Americas Investigators. Rasch analysis of a new stroke-specific outcome scale: the Stroke Impact Scale. Archives of physical medicine and rehabilitation. 2003 Jul 1;84(7):950-63. |
Yes | Unknown | KU Innovation & Collaboration, kuic@ku.edu | Nil | Yes | Tse T, Douglas J, Lentin P, Carey L. Measuring participation after stroke: a review of frequently used tools. Archives of physical medicine and rehabilitation. 2013 Jan 1;94(1):177-92. Ashford S, Brown S, Turner-Stokes L. Systematic review of patient-reported outcome measures (PROMS) for functional performance in the lower limb. Journal of rehabilitation medicine. 2015;47(1):9-17. |
| Cardiovascular | Stroke | Stroke Self-Efficacy Questionnaire | SSEQ | UK | 2008 | To measure self-efficacy judgements in specific domains of functioning relevant to individuals following stroke. | 13 | 2 | Activity; Self-management | Yes | Jones F, Partridge C, Reid F. The Stroke Self‐Efficacy Questionnaire: measuring individual confidence in functional performance after stroke. Journal of clinical nursing. 2008 Jul;17(7b):244-52. | No information | Unknown | fjones@hscs.sgul.ac.uk | Nil | ||
| Cardiovascular | Stroke | Stroke-Specific Quality Of Life Measure | SS-QOL | USA | 1999 | To assess health-related quality of life of stroke patients. | 49 | 12 | Energy; Family roles; Language; Mobility; Mood; Personality; Self-care; Social roles; Thinking; Upper extremity function; Vision; Work/productivity | Yes | Williams LS, Weinberger M, Harris LE, Clark DO, Biller J. Development of a stroke-specific quality of life scale. Stroke. 1999 Jul;30(7):1362-9. | Yes | Unknown | Linda S. Williams, lwilliams@hsrd.va.iupui.edu | Nil | Yes | Nobels-Janssen E, van der Wees PJ, Verhagen WI, Westert GP, Bartels RH, Boogaarts JD. Patient-reported outcome measures in subarachnoid hemorrhage: a systematic review. Neurology. 2019 Jun 4;92(23):1096-112. |
| Cardiovascular | Stroke | Subjective Index Of Physical And Social Outcome | SIPSO | UK | 2000 | To assess social integration following stroke. | 10 | 2 | Physical functioning/mobility; Social/emotional functioning | Yes | Trigg R, Wood VA, Hewer RL. Social reintegration after stroke: the first stages in the development of the Subjective Index of Physical and Social Outcome (SIPSO). Clinical rehabilitation. 1999 Aug;13(4):341-53. Trigg R, Wood VA. The Subjective Index of Physical and Social Outcome (SIPSO): a new measure for use with stroke patients. Clinical Rehabilitation. 2000 Jun;14(3):288-99. |
No information | Unknown | Richard Trigg, R.Trigg@bath.ac.uk | Nil | Yes | Teale EA, Young JB. A review of stroke outcome measures valid and reliable for administration by postal survey. Reviews in Clinical Gerontology. 2010 Nov;20(4):338-53. |
| Endocrine | Diabetes | Ability to Perform Physical Activities of Daily Living Questionnaire | APPADL | USA | 2011 | To assess the ability to perform daily physical activities in people who have Type II diabetes and are also obese. | 7 | No specific domains/dimensions identified | Yes | Hayes RP, Nelson DR, Meldahl ML, Curtis BH. Ability to perform daily physical activities in individuals with type 2 diabetes and moderate obesity: a preliminary validation of the Impact of Weight on Activities of Daily Living Questionnaire. Diabetes Technol Ther. 2011 Jul;13(7):705-12 Hayes RP, Schultz EM, Naegeli AN, Curtis BH. Test–retest, responsiveness, and minimal important change of the ability to perform physical activities of daily living questionnaire in individuals with type 2 diabetes and obesity. Diabetes technology & therapeutics. 2012 Dec 1;14(12):1118-25. |
Yes | Unknown | https://www.lilly.com/ | Nil | Yes | Elsman EB, Mokkink LB, Langendoen-Gort M, Rutters F, Beulens J, Elders PJ, Terwee CB. Systematic review on the measurement properties of diabetes-specific patient-reported outcome measures (PROMs) for measuring physical functioning in people with type 2 diabetes. BMJ Open Diabetes Research and Care. 2022 Jun 1;10(3):e002729. | |
| Endocrine | Diabetes | Audit Of Diabetes-Dependent Quality Of Life | ADDQoL | UK | 1999 | To assess individuals' perceptions of the impact of diabetes on their quality of life across a range of domains, and the importance of each domain. | 18 | No specific domains/dimensions identified | Yes | Bradley C, Todd C, Gorton T, Symonds E, Martin A, Plowright R. The development of an individualized questionnaire measure of perceived impact of diabetes on quality of life: the ADDQoL. Quality of Life Research. 1999 Jan;8:79-91. Bradley C, Speight J. Patient perceptions of diabetes and diabetes therapy: assessing quality of life. Diabetes/metabolism research and reviews. 2002 Sep;18(S3):S64-9. McMillan CV, Honeyford RJ, Datta J, Madge NJ, Bradley C. The development of a new measure of quality of life for young people with diabetes mellitus: the ADDQoL-Teen. Health and quality of life outcomes. 2004 Dec;2:1-4. |
Yes | Unknown | https://healthpsychologyresearch.com/guidelines/addqol19-audit-diabetes-dependent-quality-life-0/ | Nil | Yes | Garratt AM, Schmidt L, Fitzpatrick R. Patient‐assessed health outcome measures for diabetes: a structured review. Diabetic Medicine. 2002 Jan;19(1):1-1. Oluchi SE, Manaf RA, Ismail S, Kadir Shahar H, Mahmud A, Udeani TK. Health related quality of life measurements for diabetes: a systematic review. International journal of environmental research and public health. 2021 Sep 1;18(17):9245. |
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| Endocrine | Diabetes | Chronic Acquired Polyneuropathy-Patient Reported Index score | CAP-PRI | USA | 2016 | To assess health-related quality of life in patients with chronic immune-mediated demyelinating polyneuropathies. | 15 | No specific domains/dimensions identified | Yes | Gwathmey KG, Conaway MR, Sadjadi R, Joshi A, Barnett C, Bril V, Ng E, David W, Gable K, Guptill JT, Hobson-Webb LD, Dineen J, Hehir M, Brannagan TH 3rd, Byun E, Adler M, Burns TM. Construction and validation of the chronic acquired polyneuropathy patient-reported index (CAP-PRI): A disease-specific, health-related quality-of-life instrument. Muscle Nerve. 2016 Jun;54(1):9-17 Sadjadi R, Peric S, Gwathmey K, Bozovic I, Aleksa P, Bjelica B, Burns T, Basta I. Psychometric longitudinal evaluation of the Chronic Acquired Polyneuropathy Patient‐Reported Index (CAPPRI) in patients with chronic inflammatory demyelinating polyneuropathy. Muscle & Nerve. 2021 Jan;63(1):84-8. |
PubliclYes available | Unknown | https://pmc.ncbi.nlm.nih.gov/articles/PMC4950873/ | None identified in March 2025 | None identified in March 2025 | ||
| Endocrine | Diabetes | DAWN2 impact of diabetes | DIDP | Australia | 2019 | To provide a brief assessment of the perceived impact of diabetes on six key dimensions of life. | 7 | No specific domains/dimensions identified | Yes | Holmes-Truscott E, Skovlund SE, Hendrieckx C, Pouwer F, Peyrot M, Speight J. Assessing the perceived impact of diabetes on quality of life: Psychometric validation of the DAWN2 Impact of Diabetes Profile in the second Diabetes MILES - Australia (MILES-2) survey. Diabetes Res Clin Pract. 2019 Apr;150:253-263. | Yes | Unknown | sskovlund@dcm.aau.dk | Nil | Yes | Palamenghi L, Carlucci MM, Graffigna G. Measuring the quality of life in diabetic patients: a scoping review. Journal of diabetes research. 2020;2020(1):5419298. Langendoen-Gort M, Groeneveld L, Prinsen CA, Beulens JW, Elders PJ, Halperin I, Mukerji G, Terwee CB, Rutters F. Patient-reported outcome measures for assessing health-related quality of life in people with type 2 diabetes: A systematic review. Reviews in Endocrine and Metabolic Disorders. 2022 Oct;23(5):931-77. |
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| Endocrine | Diabetes | Diabetes Care Profile | DCP | USA | 1996 | To measure the social and psychological factors related to diabetes and its treatment, including beliefs, knowledge, treatment and quality of life. | 234 | 14 | Control problems; Social and personal factors; Positive attitude; Negative attitude; Self-care ability; Importance of care; Self-care adherence; Diet adherence; Medical barriers; Exercise barriers; Monitoring barriers; Understanding management practice; Long-term care benefits; Support attitudes | Yes | Fitzgerald JT, Davis WK, Connell CM, Hess GE, Funnell MM, Hiss RG. Development and validation of the Diabetes Care Profile. Evaluation & the health professions. 1996 Jun;19(2):208-30. | Yes | Unknown | https://medicine.umich.edu/sites/default/files/downloads/dcp.pdf | Yes | Oluchi SE, Manaf RA, Ismail S, Kadir Shahar H, Mahmud A, Udeani TK. Health related quality of life measurements for diabetes: a systematic review. International journal of environmental research and public health. 2021 Sep 1;18(17):9245. Palamenghi L, Carlucci MM, Graffigna G. Measuring the quality of life in diabetic patients: a scoping review. Journal of diabetes research. 2020;2020(1):5419298. |
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| Endocrine | Diabetes | Diabetes Empowerment Scale Short Form | DES-SF | USA | 2003 | To measure the psychosocial self-efficacy of people with diabetes. | 8 | No specific domains/dimensions identified | Yes | Robert M. Anderson, James T. Fitzgerald, Larry D. Gruppen, Martha M. Funnell, Mary S. Oh; The Diabetes Empowerment Scale-Short Form (DES-SF) . Diabetes Care 1 May 2003; 26 (5): 1641–1642. https://doi.org/10.2337/diacare.26.5.1641-a | Yes | Unknown | https://umich.edu/ | Nil | Yes | Wee PJ, Kwan YH, Loh DH, Phang JK, Puar TH, Østbye T, Thumboo J, Yoon S, Low LL. Measurement properties of patient-reported outcome measures for diabetes: systematic review. Journal of medical Internet research. 2021 Aug 13;23(8):e25002. | |
| Endocrine | Diabetes | Diabetes Family Behavior Scale | DFBS | USA | 1993 | To measure diabetes-specific family behaviours important to helping or hindering a child or adolescent in following a diabetes treatment regime. | 47 | 2 | Guidance-control; Warmth-caring | Yes | McKelvey J, Waller DA, North AJ, Marks JF, Schreiner B, Travis LB, Murphy JN 3rd. Reliability and validity of the Diabetes Family Behavior Scale (DFBS). Diabetes Educ 1993; 19: 125-32 | Yes | Unknown | UT Southwestern Medical Center at Dallas, D. Waller, A. North, J. McKelvey; https://www.utsouthwestern.edu/ | Nil | Yes | Bell T, Hazel E. Psychosocial assessment tools for youth with type 1 diabetes: a 10-year review. Current Diabetes Reports. 2022 Dec;22(12):549-69. |
| Endocrine | Diabetes | Diabetes Family Impact Scale | DFIS | USA | 2015 | To measure the impact of childhood diabetes (type 1) on family life. | 14 | 4 | School; Work; Finances; Family well-being | Katz ML, Volkening LK, Dougher CE, Laffel LM. Validation of the Diabetes Family Impact Scale: A new measure of diabetes‐specific family impact. Diabetic Medicine. 2015 Sep;32(9):1227-31. | No information | Unknown | lori.laffel@joslin.harvard.edu | Nil | |||
| Endocrine | Diabetes | Diabetes Health Profile | DHP-18 | UK | 1996 | To assess the psychological impact of living with Type 1 and Type 2 diabetes. | 18 | 3 | Psychological distress; Barriers to activity; Disinhibited eating | Yes | Meadows K, Steen N, McColl E, Eccles M, Shiels C, Hewison J, Hutchinson A. The Diabetes Health Profile (DHP): a new instrument for assessing the psychosocial profile of insulin requiring patients—development and psychometric evaluation. Quality of Life Research. 1996 Apr;5:242-54. Meadows KA, Abrams C, Sandbaek A. Adaptation of the Diabetes Health Profile (DHP‐1) for use with patients with Type 2 diabetes mellitus: psychometric evaluation and cross‐cultural comparison. Diabetic medicine. 2000 Aug;17(8):572-80. |
Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/diabetes-health-profile-dhp/ | Nil | Yes | Oluchi SE, Manaf RA, Ismail S, Kadir Shahar H, Mahmud A, Udeani TK. Health related quality of life measurements for diabetes: a systematic review. International journal of environmental research and public health. 2021 Sep 1;18(17):9245. Roborel de Climens A, Tunceli K, Arnould B, Germain N, Iglay K, Norquist J, Brodovicz KG. Review of patient-reported outcome instruments measuring health-related quality of life and satisfaction in patients with type 2 diabetes treated with oral therapy. Current Medical Research and Opinion. 2015 Apr 3;31(4):643-65. Palamenghi L, Carlucci MM, Graffigna G. Measuring the quality of life in diabetic patients: a scoping review. Journal of diabetes research. 2020;2020(1):5419298. |
| Endocrine | Diabetes | Diabetes Impact and Device Satisfaction Scale | DIDs | USA | 2020 | To measure patient experience related to insulin delivery device interaction. | 11 | 2 | Device satisfaction; Diabetes impact | Yes | Manning ML, Singh H, Stoner K, Habif S. The Development and Psychometric Validation of the Diabetes Impact and Device Satisfaction Scale for Individuals with Type 1 Diabetes. J Diabetes Sci Technol. 2020 Mar;14(2):309-317 | Yes | Unknown | Tandem Diabetes Care - https://www.tandemdiabetes.com/en-au/home | Nil | None identified in March 2025 | None identified in March 2025 |
| Endocrine | Diabetes | Diabetes Injection Device - Experience Questionnaire | DID-EQ | USA | 2018 | To evaluate patients' experiences with injection devices, including newer treatments for type 2 diabetes. | 10 | 4 | Device characteristics; Global items (satisfaction, ease of use, convenience of injection device) | Yes | Matza LS, Boye KS, Stewart KD, Paczkowski R, Jordan J, Murray LT. Development of the diabetes injection device experience questionnaire (DID-EQ) and diabetes injection device preference questionnaire (DID-PQ). Journal of Patient-Reported Outcomes. 2018 Dec;2:1-3. Matza LS, Stewart KD, Paczkowski R, Coyne KS, Currie B, Boye KS. Psychometric evaluation of the diabetes injection device experience questionnaire (DID-EQ) and diabetes injection device preference questionnaire (DID-PQ). Journal of Patient-Reported Outcomes. 2018 Dec;2:1-2. |
No information | Unknown | Louis Matza, louis.matza@evidera.com | Nil | Yes | Martin-Delgado J, Guilabert M, Mira-Solves J. Patient-reported experience and outcome measures in people living with diabetes: a scoping review of instruments. The Patient-Patient-Centered Outcomes Research. 2021 Nov;14(6):759-73. |
| Endocrine | Diabetes | Diabetes Intention, Attitude, And Behaviour Questionnaire | DIAB-Q | UK; USA | 2016 | To measure intention to engage in self-care behaviours in people with diabetes, including following a diabetes diet and engaging in appropriate physical activity, based on the theory of planned behaviour. | 17 | 6 | Behaviour; Planning; Intention; Perceived Behavioural Control; Attitude; Subjective norm | Yes | Traina SB, Mathias SD, Colwell HH, Crosby RD, Abraham C. The Diabetes Intention, Attitude, and Behavior Questionnaire: evaluation of a brief questionnaire to measure physical activity, dietary control, maintenance of a healthy weight, and psychological antecedents. Patient preference and adherence. 2016 Feb 29:213-22. | No information | Unknown | Shana Traina, straina@its.jnj.com | Nil | Yes | Wee PJ, Kwan YH, Loh DH, Phang JK, Puar TH, Østbye T, Thumboo J, Yoon S, Low LL. Measurement properties of patient-reported outcome measures for diabetes: systematic review. Journal of medical Internet research. 2021 Aug 13;23(8):e25002. Martin-Delgado J, Guilabert M, Mira-Solves J. Patient-reported experience and outcome measures in people living with diabetes: a scoping review of instruments. The Patient-Patient-Centered Outcomes Research. 2021 Nov;14(6):759-73. |
| Endocrine | Diabetes | Diabetes Medication Satisfaction | DiabMedSat | USA | 2006 | To assess diabetes treatment satisfaction, applicable to a wide range of diabetes therapies and for both Type 1 and Type 2 diabetes patients. | 21 | 3 | Burden; Efficacy; Symptoms | Yes | Brod M, Skovlund SE, Wittrup-Jensen KU. Measuring the impact of diabetes through patient report of treatment satisfaction, productivity and symptom experience. Quality of Life Research. 2006 Apr;15:481-91. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/diabetes-medication-satisfaction | Nil | Yes | Roborel de Climens A, Tunceli K, Arnould B, Germain N, Iglay K, Norquist J, Brodovicz KG. Review of patient-reported outcome instruments measuring health-related quality of life and satisfaction in patients with type 2 diabetes treated with oral therapy. Current Medical Research and Opinion. 2015 Apr 3;31(4):643-65. Eton DT, Elraiyah TA, Yost KJ, Ridgeway JL, Johnson A, Egginton JS, Mullan RJ, Murad MH, Erwin PJ, Montori VM. A systematic review of patient-reported measures of burden of treatment in three chronic diseases. Patient related outcome measures. 2013 Jun 5:7-20. |
| Endocrine | Diabetes | Diabetes Pen Experience Measure | DPEM | USA | 2022 | To evaluate patients’ experience when using an injection device. | 7 | No specific domains/dimensions identified | Yes | Brod M, Waldman LT, Sparre T, Busk AK. Development and Validation of the Diabetes Pen Experience Measure (DPEM): A New Patient-Reported Outcome Measure. J Diabetes Sci Technol. 2022 Mar 14:19322968221079396 | Yes | Unknown | Novo Nordisk - www.novonordisk.com | Nil | None identified in March 2025 | None identified in March 2025 | |
| Endocrine | Diabetes | Diabetes Productivity Measure | DPM | USA | 2006 | To assess the symptom experience of patients with diabetes mellitus (both Type 1 and Type 2 diabetes patients). | 14 | 2 | Life productivity; Work productivity | Yes | Brod M, Skovlund SE, Wittrup-Jensen KU. Measuring the impact of diabetes through patient report of treatment satisfaction, productivity and symptom experience. Quality of Life Research. 2006 Apr;15:481-91. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/diabetes-productivity-measure | Nil | Yes | Martin-Delgado J, Guilabert M, Mira-Solves J. Patient-reported experience and outcome measures in people living with diabetes: a scoping review of instruments. The Patient-Patient-Centered Outcomes Research. 2021 Nov;14(6):759-73. |
| Endocrine | Diabetes | Diabetes Quality Of Life | DQoL | USA | 1988 | To provide a treatment focused assessment of quality of life suitable for use with both Type 1 and Type 2 diabetes patients. | 46 | 4 | Satisfaction with treatment; Impact of treatment; Worry about the future effects of diabetes; Worry about social/vocational issues | Yes | DCCT Research Group. Reliability and validity of a diabetes quality-of-life measure for the diabetes control and complications trial (DCCT). Diabetes care. 1988 Oct 1;11(9):725-32. Jacobson AM, Groot MD, Samson JA. The evaluation of two measures of quality of life in patients with type I and type II diabetes. Diabetes care. 1994 Apr 1;17(4):267-74. Burroughs TE, Desikan R, Waterman BM, Gilin D, McGill J. Development and validation of the diabetes quality of life brief clinical inventory. Diabetes spectrum. 2004 Jan 1;17(1):41-9. |
No copYesright or publiclYes available | Unknown | Dr. Thomas E. Burroughs, St. Louis University Center for Outcomes Research, Salus Center, Room 2378, 3545 Lafayette Ave., St. Louis, MO 63104 | https://diabetesjournals.org/spectrum/article/17/1/41/1784/Development-… | Yes | Oluchi SE, Manaf RA, Ismail S, Kadir Shahar H, Mahmud A, Udeani TK. Health related quality of life measurements for diabetes: a systematic review. International journal of environmental research and public health. 2021 Sep 1;18(17):9245. El Achhab Y, Nejjari C, Chikri M, Lyoussi B. Disease-specific health-related quality of life instruments among adults diabetic: a systematic review. Diabetes research and clinical practice. 2008 May 1;80(2):171-84. |
| Endocrine | Diabetes | Diabetes Symptom Checklist-Revised | DSC-R | The Netherlands | 1994 | To measure the occurrence and the perceived burden of physical and psychological symptoms related to Type 2 diabetes and its possible complications. | 34 | 8 | Psychological-fatigue; Psychological-cognitive; Neuropathic pain; Neuropathic sensory; Cardiovascular; Ophthalmologic; Hypoglycaemic; Hyperglycaemic | Yes | Grootenhuis PA, Snoek FJ, Heine RJ, Bouter LM. Development of a type 2 diabetes symptom checklist: a measure of symptom severity. Diabetic Medicine. 1994 Apr;11(3):253-61. Arbuckle RA, Humphrey L, Vardeva K, Arondekar B, Danten-Viala M, Scott JA, Snoek FJ. Psychometric evaluation of the Diabetes Symptom Checklist-Revised (DSC-R)—a measure of symptom distress. Value in health. 2009 Nov 1;12(8):1168-75. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/diabetes-symptom-checklist-revised | Nil | Yes | Terwee CB, Elders PJ, Blom MT, Beulens JW, Rolandsson O, Rogge AA, Rose M, Harman N, Williamson PR, Pouwer F, Mokkink LB. Patient-reported outcomes for people with diabetes: what and how to measure? A narrative review. Diabetologia. 2023 Aug;66(8):1357-77. |
| Endocrine | Diabetes | Diabetes Symptom Measure | DSM | USA | 2006 | To measure impairments to productivity in patients with diabetes mellitus, and for both Type 1 and Type 2 diabetes patients. | 30 | No specific domains/dimensions identified | Yes | Brod M, Skovlund SE, Wittrup-Jensen KU. Measuring the impact of diabetes through patient report of treatment satisfaction, productivity and symptom experience. Quality of Life Research. 2006 Apr;15:481-91. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/diabetes-symptom-measurehttps://eprovide.mapi-trust.org/instruments/diabetes-symptom-measure | Nil | Yes | Martin-Delgado J, Guilabert M, Mira-Solves J. Patient-reported experience and outcome measures in people living with diabetes: a scoping review of instruments. The Patient-Patient-Centered Outcomes Research. 2021 Nov;14(6):759-73. | |
| Endocrine | Diabetes | Diabetes Treatment Satisfaction Questionnaire Status Version/Change Version | DTSQs/DTSQc | UK | 1988 | To assess absolute levels of satisfaction, or changes over time in satisfaction (change version) with diabetes treatments in people with diabetes (Type 1 and Type 2). | 8 | 3 | Treatment satisfaction; Perceived frequency of hyperglycaemia; Perceived frequency of hypoglycaemia | Yes | Lewis KS, Bradley C, Knight G, Boulton AJ, Ward JD. A measure of treatment satisfaction designed specifically for people with insulin‐dependent diabetes. Diabetic Medicine. 1988 Apr;5(3):235-42. Bradley C, Lewis KS. Measures of psychological well‐being and treatment satisfaction developed from the responses of people with tablet‐treated diabetes. Diabetic Medicine. 1990 Jun;7(5):445-51. Bradley C. The Diabetes Treatment Satisfaction Questionnaire: (DTSQ). In Bradley C. Handbook of Psychology and Diabetes. New York: Harwood Academic Publishers. 1994. p. 111-132. Bradley C, Plowright R, Stewart J, Valentine J, Witthaus E. The Diabetes Treatment Satisfaction Questionnaire change version (DTSQc) evaluated in insulin glargine trials shows greater responsiveness to improvements than the original DTSQ. Health and quality of life outcomes. 2007 Dec;5:1-2. Bradley C, Loewenthal K, Woodcock A, McMillan C. Development of the diabetes treatment satisfaction questionnaire (DTSQ) for teenagers and parents: the DTSQ-Teen and the DTSQ-Parent. Diabetologia. 2009 Sep 1;52(Suppl 1):S397. |
Yes | Unknown | https://healthpsychologyresearch.com/guidelines/dtsq-diabetes-treatment-satisfaction-questionnaire/ | Nil | Yes | Speight J, Reaney MD, Barnard KD. Not all roads lead to Rome—a review of quality of life measurement in adults with diabetes. Diabetic Medicine. 2009 Apr;26(4):315-27. Roborel de Climens A, Tunceli K, Arnould B, Germain N, Iglay K, Norquist J, Brodovicz KG. Review of patient-reported outcome instruments measuring health-related quality of life and satisfaction in patients with type 2 diabetes treated with oral therapy. Current Medical Research and Opinion. 2015 Apr 3;31(4):643-65. Martin-Delgado J, Guilabert M, Mira-Solves J. Patient-reported experience and outcome measures in people living with diabetes: a scoping review of instruments. The Patient-Patient-Centered Outcomes Research. 2021 Nov;14(6):759-73. |
| Endocrine | Diabetes | Diabetic Foot Self-Care Questionnaire | DFSQ-UMA | Spain | 2015 | To evaluate foot self-care of diabetic patients. | 16 | 3 | Self care; Self-management and self-examination; Footwear and socks | Yes | Navarro-Flores E, Morales-Asencio JM, Cervera-Marín JA, Labajos-Manzanares MT, Gijon-Nogueron G. Development, validation and psychometric analysis of the diabetic foot self-care questionnaire of the University of Malaga, Spain (DFSQ-UMA). J Tissue Viability. 2015 Feb;24(1):24-34 Ruiz-Muñoz M, Fernández-Torres R, Formosa C, Gatt A, Gijón-Noguerón G, Navarro-Flores E, González-Sánchez M. Validity and reliability of the English version of the Diabetic Foot Self-Care Questionnaire: a cross-cultural adaptation. Frontiers in Public Health. 2024 Jan 24;11:1326439. |
No information | Unknown | Emmanuel Navarro-Flores, Department of Nursing and Podiatry, Faculty of Health Sciences, University of Malaga, C/Arquitecto Francisco Peñalosa, Ampliación del Campus de Teatinos, 29071 Málaga, Spain; emmnavflo@uma.es | https://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2023.1326439/full#supplementary-material | Yes | Ortega-Avila AB, Cervera-Garvi P, Ramos-Petersen L, Chicharro-Luna E, Gijon-Nogueron G. Patient-reported outcome measures for patients with diabetes mellitus associated with foot and ankle pathologies: a systematic review. Journal of Clinical Medicine. 2019 Jan 27;8(2):146. Perez-Panero AJ, Ruiz-Munoz M, Fernandez-Torres R, Formosa C, Gatt A, Gonzalez-Sanchez M. Diabetic foot disease: a systematic literature review of patient-reported outcome measures. Quality of Life Research. 2021 Dec;30(12):3395-405. |
| Endocrine | Diabetes | Diabetic Foot Ulcer Scale | DFS | UK | 2002 | To measure the impact of diabetic foot ulcers and their treatment on quality of life from the patient’s perspective. | 64 | 11 | Leisure; Physical health; Daily activities; Emotions; Noncompliance; Family; Friends; Positive attitude; Treatment; Satisfaction; Financial - plus an additional 6 items for daily/employment-related issues | Yes | Abetz L, Sutton M, Brady L, McNulty P, Gagnon DD. The Diabetic Foot Ulcer Scale (DFS): a quality of life instrument for use in clinical trials. Practical Diabetes International. 2002 Jul;19(6):167-75. Bann CM, Fehnel SE, Gagnon DD. Development and validation of the Diabetic Foot Ulcer Scale-short form (DFS-SF). Pharmacoeconomics. 2003 Dec;21:1277-90. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/diabetic-foot-ulcer-scale | Nil | Yes | Perez-Panero AJ, Ruiz-Munoz M, Fernandez-Torres R, Formosa C, Gatt A, Gonzalez-Sanchez M. Diabetic foot disease: a systematic literature review of patient-reported outcome measures. Quality of Life Research. 2021 Dec;30(12):3395-405. Elsman EB, Mokkink LB, Langendoen-Gort M, Rutters F, Beulens J, Elders PJ, Terwee CB. Systematic review on the measurement properties of diabetes-specific patient-reported outcome measures (PROMs) for measuring physical functioning in people with type 2 diabetes. BMJ Open Diabetes Research and Care. 2022 Jun 1;10(3):e002729. |
| Endocrine | Diabetes | Financial toxicity-functional assessment of chronic illness | COST-FACIT | USA | 2014 | To describe the financial distress experienced by cancer patients. | 12 | No specific domains/dimensions identified | Yes | De Souza JA, Yap BJ, Hlubocky FJ, Wroblewski K, Ratain MJ, Cella D, Daugherty CK. The development of a financial toxicity patient‐reported outcome in cancer: the COST measure. Cancer. 2014 Oct 15;120(20):3245-53. Patel MR, Zhang G, Heisler M, Song PXK, Piette JD, Shi X, Choe HM, Smith A, Resnicow K. Measurement and Validation of the Comprehensive Score for Financial Toxicity (COST) in a Population With Diabetes. Diabetes Care. 2022 Nov 1;45(11):2535-2543. doi: 10.2337/dc22-0494. PMID: 36048837; PMCID: PMC9679256. |
Yes | Unknown | https://www.facit.org/measures/facit-cost | Nil | None identified in March 2025 | None identified in March 2025 | |
| Endocrine | Diabetes | Health and Self-Management in Diabetes questionnaire | HASMID-10 | UK | 2017 | To measure the quality of life impact of self-managing Type 1 and 2 Diabetes, capturing both health and treatment experience. | 10 | No specific domains/dimensions identified | Yes | Carlton J, Elliott J, Rowen D, Stevens K, Basarir H, Meadows K, Brazier J. Developing a questionnaire to determine the impact of self-management in diabetes: giving people with diabetes a voice. Health and quality of life outcomes. 2017 Dec;15:1-0. Carlton J, Rowen D, Elliott J. Assessment of the psychometric properties and refinement of the Health and Self-Management in Diabetes Questionnaire (HASMID). Health Qual Life Outcomes. 2020 Mar 5;18(1):59. |
Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/hasmid-10/ | Nil | None identified in March 2025 | None identified in March 2025 | |
| Endocrine | Diabetes | Hypoglycemic Attitudes and Behavior Scale | HABS | USA | 2015 | To identify hypoglycaemic concerns of adults with diabetes. | 14 | 3 | Hypoglycaemia anxiety; Hypoglycaemia avoidance; Hypoglycaemia confidence | Yes | Polonsky WH, Fisher L, Hessler D, Edelman SV. Identifying the worries and concerns about hypoglycemia in adults with type 2 diabetes. J Diabetes Complications. 2015 Nov-Dec;29(8):1171-6 | Yes | Yes, fees may apply | https://behavioraldiabetes.org/scales-and-measures/ | Nil | None identified in March 2025 | None identified in March 2025 |
| Endocrine | Diabetes | Hypoglycemic Confidence Scale | HCS | USA | 2017 | To assess patient hypoglycaemia confidence, the sense of personal strength and comfort from believing one has the resources to stay safe from problems related to hypoglycaemia. | 9 | No specific domains/dimensions identified | Yes | Polonsky WH, Fisher L, Hessler D, Edelman SV. Investigating Hypoglycemic Confidence in Type 1 and Type 2 Diabetes. Diabetes Technol Ther. 2017 Feb;19(2):131-136 | Yes | Yes, fees may apply | https://behavioraldiabetes.org/scales-and-measures/ | Nil | Yes | Carlton J, Leaviss J, Pouwer F, Hendrieckx C, Broadley MM, Clowes M, McCrimmon RJ, Heller SR, Speight J. The suitability of patient-reported outcome measures used to assess the impact of hypoglycaemia on quality of life in people with diabetes: a systematic review using COSMIN methods. Diabetologia. 2021 Jun;64:1213-25. | |
| Endocrine | Diabetes | Impact of Weight on Self-Perception | IW-SP | USA | 2015 | To assess the impact of weight on self-perceptions of individuals with Type 2 Diabetes and obesity. | 3 | No specific domains/dimensions identified | Yes | Hayes RP, DeLozier AM. Reliability, validity, and responsiveness of the Impact of Weight on Self-Perceptions Questionnaire (IW-SP) in individuals with type 2 diabetes and obesity. Diabetes Technol Ther. 2015 Mar;17(3):210-4 | Yes | Unknown | https://www.lilly.com/ | Nil | None identified in March 2025 | None identified in March 2025 | |
| Endocrine | Diabetes | Influence and motivation for patient activation in diabetes care | impact-D | USA | 2020 | To measure the degree to which patients with type 2 diabetes value health and believe they can influence it. | 6 | No specific domains/dimensions identified | Yes | Arvanitis M, Bailey SC, Wismer G, Griffith JW, Freeman E, Sims TJ, Paczkowski R, Klopchin M, Chung AE, Carpenter DM, Wolf MS. Development of the influence, motivation, and patient activation in diabetes (IMPACT-D™) measure. Diabetes Res Clin Pract. 2020 Jan;159:107965. | Yes | Unknown | Marina Arvanitis, marina.arvanitis@northwestern.edu | Nil | None identified in March 2025 | None identified in March 2025 | |
| Endocrine | Diabetes | Insulin Dosing Systems: Perceptions, Ideas, Reflections and Expectations Questionnaires | INSPIRE | USA | 2019 | To measure the impact of automated insulin dosing systems on psychosocial functioning and quality of life of individuals with Type 1 Diabetes. | 22 | No specific domains/dimensions identified | Yes | Weissberg‐Benchell J, Shapiro JB, Hood K, Laffel LM, Naranjo D, Miller K, Barnard K. Assessing patient‐reported outcomes for automated insulin delivery systems: the psychometric properties of the INSPIRE measures. Diabetic Medicine. 2019 May;36(5):644-52. | Yes | Unknown | Katherine Barnard-Kelly, katherinebarnard@bhrltd.com | Nil | Yes | Bell T, Hazel E. Psychosocial assessment tools for youth with type 1 diabetes: a 10-year review. Current Diabetes Reports. 2022 Dec;22(12):549-69. | |
| Endocrine | Diabetes | Personal Diabetes Questionnaire | PDQ | USA | 2011 | To measure diabetes self-care behaviours, perceptions and barriers in patients with Type 1 and Type 2 diabetes. | 68 | 8 | Perceived blood glucose control; Weight change readiness; Dietary knowledge and skills; Diet change readiness; Diet decision making; Eating problems; Diet barriers; Problems in medication use; Medication barriers; Blood glucose monitoring barriers; Exercise barriers | Yes | Stetson B, Schlundt D, Rothschild C, Floyd JE, Rogers W, Mokshagundam SP. Development and validation of The Personal Diabetes Questionnaire (PDQ): a measure of diabetes self-care behaviors, perceptions and barriers. Diabetes research and clinical practice. 2011 Mar 1;91(3):321-32. | PubliclYes available | Unknown | https://healthbehavior.psy.vanderbilt.edu/PDQ.pdf | Yes | Montagut‐Martínez P, Pérez‐Cruzado D, Gutiérrez‐Sánchez D. The dietary knowledge measurement instruments in diabetes: A systematic psychometric review. Journal of Advanced Nursing. 2021 Jun;77(6):2595-622. Wee PJ, Kwan YH, Loh DH, Phang JK, Puar TH, Østbye T, Thumboo J, Yoon S, Low LL. Measurement properties of patient-reported outcome measures for diabetes: systematic review. Journal of medical Internet research. 2021 Aug 13;23(8):e25002. |
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| Endocrine | Diabetes | Problem Areas In Diabetes Scale | PAID | USA | 1995 | To assess emotional functioning and problem areas in patients with Type 1 and Type 2 diabetes. | 20 | 4 | Emotional; Diabetes management; Treatment; Social support | Yes | Polonsky WH, Anderson BJ, Lohrer PA, Welch G, Jacobson AM, Aponte JE, Schwartz CE. Assessment of diabetes-related distress. Diabetes care. 1995 Jun 1;18(6):754-60. Welch GW, Jacobson AM, Polonsky WH. The Problem Areas in Diabetes Scale: an evaluation of its clinical utility. Diabetes care. 1997 May 1;20(5):760-6. Markowitz JT, Volkening LK, Butler DA, Laffel LM. Youth-perceived burden of type 1 diabetes: Problem Areas in Diabetes Survey–Pediatric version (PAID-Peds). Journal of diabetes science and technology. 2015 Apr 24;9(5):1080-5. Martin CE, Renn BN, Winderman KE, Hundt N, Petersen NJ, Naik AD, Cully JA. Classifying diabetes-burden: A factor analysis of the Problem Areas in Diabetes Scale. Journal of Health Psychology. 2018 May;23(6):882-8. McGuire BE, Morrison TG, Hermanns N, Skovlund S, Eldrup E, Gagliardino J, Kokoszka A, Matthews D, Pibernik-Okanović M, Rodríguez-Saldaña J, De Wit M. Short-form measures of diabetes-related emotional distress: the Problem Areas in Diabetes Scale (PAID)-5 and PAID-1. Diabetologia. 2010 Jan;53:66-9. Stanulewicz N, Mansell P, Cooke D, Hopkins D, Speight J, Blake H. PAID-11: a brief measure of diabetes distress validated in adults with type 1 diabetes. Diabetes research and clinical practice. 2019 Mar 1;149:27-38. |
Yes | Unknown | Dr G. Welch, Garry.Welch@Joslin.Harvard.edu | https://professional.diabetes.org/sites/default/files/media/ada_mental_… | Yes | Kenny E, O’Malley R, Roche K, Morrissey E, Dinneen SF, Byrne M, Casey B. Diabetes distress instruments in adults with Type 1 diabetes: A systematic review using the COSMIN (COnsensus‐based Standards for the selection of health status Measurement INstruments) checklist. Diabetic Medicine. 2021 Apr;38(4):e14468. Lee J, Lee EH, Kim CJ, Moon SH. Diabetes-related emotional distress instruments: a systematic review of measurement properties. International journal of nursing studies. 2015 Dec 1;52(12):1868-78. Langendoen-Gort M, Groeneveld L, Prinsen CA, Beulens JW, Elders PJ, Halperin I, Mukerji G, Terwee CB, Rutters F. Patient-reported outcome measures for assessing health-related quality of life in people with type 2 diabetes: A systematic review. Reviews in Endocrine and Metabolic Disorders. 2022 Oct;23(5):931-77. |
| Endocrine | Diabetes | Questionnaire for Diabetes Related Foot Disease | Q-DFD | Australia | 2009 | To determine the presence of peripheral sensory neuropathy and peripheral vascular disease. | 12 | 5 | Peripheral neuropathy; Peripheral vasculopathy; Foot ulceration; Amputation; Foot deformity | Yes | Bergin SM, Brand CA, Colman PG, Campbell DA. A questionnaire for determining prevalence of diabetes related foot disease (Q-DFD): construction and validation. J Foot Ankle Res. 2009 Nov 25;2:34. | Yes | Unknown | s.bergin@cgmc.org.au | Nil | Yes | Jia Y, Huang H, Gagnier JJ. A systematic review of measurement properties of patient-reported outcome measures for use in patients with foot or ankle diseases. Quality of Life Research. 2017 Aug;26:1969-2010. Ortega-Avila AB, Cervera-Garvi P, Ramos-Petersen L, Chicharro-Luna E, Gijon-Nogueron G. Patient-reported outcome measures for patients with diabetes mellitus associated with foot and ankle pathologies: a systematic review. Journal of Clinical Medicine. 2019 Jan 27;8(2):146. |
| Endocrine | Diabetes | Re-Engineered Discharge for Diabetes Computer Adaptive Test | REDD-CAT | USA | 2021 | To evaluate the social determinants of health for people with Type II diabetes mellitus. | 146 | 8 | Healthcare access; Medication adherence; Illness burden; Housing stability; Health seeking behaviour (Primary care provider-specific; General beliefs; Family/friends specific; Internet-specific) | Yes | Carlozzi N, Kallen M, Moldovan I, Bragg A, Howard J, Miner J, Graves C, Mitchell S. The Re-Engineered Discharge for Diabetes Computer Adaptive Test (REDD-CAT): New patient-reported outcome measures that evaluate social determinants of health for persons with Type 2 Diabetes Mellitus. Archives of Physical Medicine and Rehabilitation. 2021 Oct 1;102(10):e6-7. Mitchell S, Kallen MA, Troost JP, Bragg A, Martin-Howard J, Moldovan I, Miner JA, Jack BW, Carlozzi NE. Development and calibration data for the Illness Burden item bank: a new computer adaptive test for persons with type 2 diabetes mellitus. Qual Life Res. 2023 Mar;32(3):797-811. doi: 10.1007/s11136-022-03282-0. Epub 2022 Oct 25. PMID: 36282447; PMCID: PMC10472317. Mitchell SE, Kallen MA, Troost JP, De La Cruz BA, Bragg A, Martin-Howard J, Moldovan I, Miner JA, Jack BW, Carlozzi NE. Four New Patient-Reported Outcome Measures Examining Health-Seeking Behavior in Persons With Type 2 Diabetes Mellitus (REDD-CAT): Instrument Development Study. JMIR diabetes. 2024 Nov 22;9:e63434. Carlozzi NE, Kallen MA, Troost JP, Bragg A, Martin-Howard J, De La Cruz B, Miner JA, Moldovan I, Jack BW, Mitchell S. Development and calibration data for the Healthcare Access Item Bank: A new computer adaptive test for persons with type 2 diabetes mellitus. Quality of Life Research. 2023 Mar;32(3):781-96. Carlozzi NE, Kallen MA, Troost J, Bragg A, Martin-Howard J, Moldovan I, Miner JA, Jack BW, Mitchell S. Development and calibration data for the Medication Adherence Item Bank: A new computer adaptive test for persons with type 2 diabetes mellitus. Quality of Life Research. 2023 Mar;32(3):813-26. |
No information | Unknown | Noelle E Carlozzi, carlozzi@med.umich.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Endocrine | Diabetes | Self Care Inventory-Revised | SCI-R | USA | 2005 | To evaluate perceived adherence to diabetes self-care recommendations among adults with diabetes over the preceding 2 months. | 15 | No specific domains/dimensions identified | Yes | Weinger K, Butler HA, Welch GW, La Greca AM. Measuring diabetes self-care: a psychometric analysis of the Self-Care Inventory-Revised with adults. Diabetes care. 2005 Jun 1;28(6):1346-52. | Yes | Unknown | Annette M La Greca/University of Miami | https://people.miami.edu/_assets-profiles/acad-as/pdf/psychology/annett… | Yes | Lee J, Lee EH, Chae D, Kim CJ. Patient-reported outcome measures for diabetes self-care: A systematic review of measurement properties. International Journal of Nursing Studies. 2020 May 1;105:103498. | |
| Endocrine | Diabetes | Summary of Diabetes Self-Care Activities | SDSCA | USA | 2000 | To measure diabetes self-management. | 11 | 5 | General diet; Specific diet; Exercise; Blood-glucose testing; Foot care; Smoking | Yes | Toobert DJ, Hampson SE, Glasgow RE. The summary of diabetes self-care activities measure: results from 7 studies and a revised scale. Diabetes Care. 2000 Jul;23(7):943-50 Toobert DJ, Glasgow RE. Assessing diabetes self-management: the summary of diabetes self-care activities questionnaire. Handbook of psychology and diabetes: A guide to psychological measurement in diabetes research and practice. 1994;351:75. |
Yes | Yes, fees may apply | https://eprovide.mapi-trust.org/instruments/summary-of-diabetes-self-care-activities | Nil | Yes | Martin-Delgado J, Guilabert M, Mira-Solves J. Patient-reported experience and outcome measures in people living with diabetes: a scoping review of instruments. The Patient-Patient-Centered Outcomes Research. 2021 Nov;14(6):759-73. Wee PJ, Kwan YH, Loh DH, Phang JK, Puar TH, Østbye T, Thumboo J, Yoon S, Low LL. Measurement properties of patient-reported outcome measures for diabetes: systematic review. Journal of medical Internet research. 2021 Aug 13;23(8):e25002. |
| Endocrine | Diabetes | Treatment Related Impact Measure For Diabetes And Diabetes Device | TRIM-Diabetes/Device | UK; USA | 2009 | To measure of treatment related impact on patients using diabetes medication and diabetes devices. | 36 | 7 | Treatment burden; Daily life; Diabetes management; Compliance; Psychological health; Device function; Device bother | Yes | Brod M, Hammer M, Christensen T, Lessard S, Bushnell DM. Understanding and assessing the impact of treatment in diabetes: the Treatment-Related Impact Measures for Diabetes and Devices (TRIM-Diabetes and TRIM-Diabetes Device). Health and Quality of Life Outcomes. 2009 Dec;7:1-7. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/treatment-related-impact-me… https://eprovide.mapi-trust.org/instruments/treatment-related-impact-me… |
Nil | Yes | James KA, Cadel L, Hitzig SL, Guilcher SJ. Patient-reported outcome measures for medication-related quality of life: A scoping review. Research in Social and Administrative Pharmacy. 2022 Sep 1;18(9):3501-23. Martin-Delgado J, Guilabert M, Mira-Solves J. Patient-reported experience and outcome measures in people living with diabetes: a scoping review of instruments. The Patient-Patient-Centered Outcomes Research. 2021 Nov;14(6):759-73. |
| Endocrine | Diabetes | Treatment-Related Impact Measure-Hypoglycemic Events | TRIM-HYPO | USA | 2015 | To assess the impact of non-severe hypoglycaemic events and treatment. | 33 | 5 | Daily function; Emotional well-being; Diabetes management; Sleep disruption; Work productivity | Yes | Brod M, Højbjerre L, Bushnell DM, Hansen CT. Assessing the impact of non-severe hypoglycemic events and treatment in adults: development of the Treatment-Related Impact Measure-Non-severe Hypoglycemic Events (TRIM-HYPO). Qual Life Res. 2015 Dec;24(12):2971-84 | Yes | Unknown | Novo Nordisk - www.novonordisk.com | Nil | Yes | Palamenghi L, Carlucci MM, Graffigna G. Measuring the quality of life in diabetic patients: a scoping review. Journal of diabetes research. 2020;2020(1):5419298. |
| Endocrine | Diabetes, foot ulcer | Cardiff Wound Impact Questionnaire | CWIS | UK | 2004 | To measure the impact of chronic wounds (leg ulcers, diabetic foot ulcers) on patient health-related quality of life and identify areas of patient concern. | 26 | 3 | Physical symptoms and everyday living; Social life; Well-being | Yes | Price P, Harding K. Cardiff Wound Impact Schedule: the development of a condition-specific questionnaire to assess health-related quality of life in patients with chronic wounds of the lower limb. Int Wound J. 2004 Apr;1(1):10-7 | Yes | Yes, fees may apply | https://www.wwic.wales/research/cardiff-wound-impact-schedule-cwis | Nil | Yes | Elsman EB, Mokkink LB, Langendoen-Gort M, Rutters F, Beulens J, Elders PJ, Terwee CB. Systematic review on the measurement properties of diabetes-specific patient-reported outcome measures (PROMs) for measuring physical functioning in people with type 2 diabetes. BMJ Open Diabetes Research and Care. 2022 Jun 1;10(3):e002729. Romero-Collado A, Hernández-Martínez-Esparza E, Zabaleta-del-Olmo E, Urpi-Fernandez AM, Santesmases-Masana R. Patient-reported outcome measures of quality of life in people affected by diabetic foot: a psychometric systematic review. Value in Health. 2022 Sep 1;25(9):1602-18. |
| Gastrointestinal | Crohn's disease | Crohn’s Anal Fistula Quality of Life | CAF-QOL | UK | 2021 | To measure quality of life specific to patients with Crohn's disease and perianal fistulas. | 28 | No specific domains/dimensions identified | Yes | Adegbola SO, Dibley L, Sahnan K, Wade T, Verjee A, Sawyer R, Mannick S, McCluskey D, Bassett P, Yassin N, Warusavitarne J, Faiz O, Phillips R, Tozer PJ, Norton C, Hart AL. Development and initial psychometric validation of a patient-reported outcome measure for Crohn's perianal fistula: the Crohn's Anal Fistula Quality of Life (CAF-QoL) scale. Gut. 2021 Sep;70(9):1649-1656. doi: 10.1136/gutjnl-2019-320553. Epub 2020 Dec 3. PMID: 33272978; PMCID: PMC8355881. | Yes | Unknown | Manish Patel– Imperial College London, nhsinfo@imperial.ac.uk | Nil | None identified in March 2025 | None identified in March 2025 | |
| Gastrointestinal | Crohn's disease | Crohn's Life Impact Questionnaire | CLIQ | UK | 2015 | To measure the impact of Crohn's disease and its treatment from the patients' perspective. | 27 | No specific domains/dimensions identified | Yes | Wilburn J, McKenna SP, Twiss J, Kemp K, Campbell S. Assessing quality of life in Crohn’s disease: development and validation of the Crohn’s Life Impact Questionnaire (CLIQ). Quality of Life Research. 2015 Sep;24:2279-88. | Yes | Unknown | https://www.galen-research.com/measures-database/ | Nil | Yes | Chen XL, Zhong LH, Wen Y, Liu TW, Li XY, Hou ZK, Hu Y, Mo CW, Liu FB. Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties. Health and quality of life outcomes. 2017 Dec;15:1-3. | |
| Gastrointestinal | Crohn's disease | Patient Harvey Bradshaw Index | P-HBI | The Netherlands | 2013 | To assess disease-specific symptoms in patients with Crohn's disease, providing a measure of disease activity over the preceding 24 hours. | 4 | No specific domains/dimensions identified | Yes | Evertsz FB, Hoeks CC, Nieuwkerk PT, Stokkers PC, Ponsioen CY, Bockting CL, Sanderman R, Sprangers MA. Development of the patient Harvey Bradshaw index and a comparison with a clinician-based Harvey Bradshaw index assessment of Crohn’s disease activity. Journal of clinical gastroenterology. 2013 Nov 1;47(10):850-6. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/patient-harvey-bradshaw-index | Nil | Yes | de Jong MJ, Huibregtse R, Masclee AA, Jonkers DM, Pierik MJ. Patient-reported outcome measures for use in clinical trials and clinical practice in inflammatory bowel diseases: a systematic review. Clinical Gastroenterology and Hepatology. 2018 May 1;16(5):648-63. | |
| Gastrointestinal | Gastrointestinal diseases | Gastrointestinal Quality Of Life Index | GIQLI | Germany | 1993 | To evaluate quality of life in patients with gastrointestinal disorders. | 36 | 5 | Core symptoms; Physical; Psychological; Social; Disease specific | Yes | Eypasch E, Wood-Dauphinée S, Williams JI, Ure B. Der gastrointestinale lebensqualitätsindex (GLQI). Chirurg. 1993;64:264-. Eypasch E, Williams JI, Wood-Dauphinee S, Ure BM, Schmulling C, Neugebauer E, Troidl H. Gastrointestinal Quality of Life Index: development, validation and application of a new instrument. Journal of British Surgery. 1995 Feb;82(2):216-22. Fuchs KH, Musial F, Retzbach L, Hann A, Meining A. Quality of life in benign colorectal disease—a review of the assessment with the Gastrointestinal Quality of Life Index (GIQLI). International Journal of Colorectal Disease. 2023 Jun 20;38(1):172. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/gastrointestinal-quality-of-life-index | Nil | Yes | Dellenmark-Blom M, Quitmann J, Dingemann C. Health-related quality of life in patients after repair of esophageal atresia: a review of current literature. European Journal of Pediatric Surgery. 2020 Jun;30(03):239-50. De Vries CE, Kalff MC, Prinsen CA, Coulman KD, den Haan C, Welbourn R, Blazeby JM, Morton JM, van Wagensveld BA. Recommendations on the most suitable quality‐of‐life measurement instruments for bariatric and body contouring surgery: a systematic review. Obesity Reviews. 2018 Oct;19(10):1395-411. |
| Gastrointestinal | Gastrointestinal, Gastro-Oesophageal Reflux Disease (GORD) | Patient Assessment Of Gastrointestinal Disorders - Quality Of Life | PAGI-QOL | France; Germany; Italy; The Netherlands; Poland; USA | 2004 | To measure quality of life in patients with upper gastrointestinal disorders. | 30 | 5 | Daily activities; Clothing; Diet and food habits; Relationships; Psychological wellbeing and distress | Yes | De la Loge C, Trudeau E, Marquis P, Kahrilas P, Stanghellini V, Talley NJ, Tack J, Revicki DA, Rentz AM, Dubois D. Cross-cultural development and validation of a patient self-administered questionnaire to assess quality of life in upper gastrointestinal disorders: The PAGI-QOL©. Quality of Life Research. 2004 Dec;13:1751-62. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/patient-assessment-of-upper-gastrointestinal-disorders-quality-of-life | https://link.springer.com/article/10.1007/s11136-004-8751-3 | Yes | Chassany O, Holtmann G, Malagelada J, Gebauer U, Doerfler H, Devault K. Systematic review: health‐related quality of life (HRQOL) questionnaires in gastro‐oesophageal reflux disease. Alimentary pharmacology & therapeutics. 2008 Jun;27(11):1053-70. |
| Gastrointestinal | Gastrointestinal, Gastro-Oesophageal Reflux Disease (GORD) | Patient Assessment Of Gastrointestinal Disorders - Symptom Severity Index | PAGI-SYM | France; Germany; Italy; The Netherlands; Poland; USA | 2004 | To assess symptom severity in patients with upper gastrointestinal disorders. | 20 | 6 | Heartburn regurgitation; Nausea/vomiting; Fullness/early satiety; Bloating; Upper abdominal pain; Lower abdominal pain | Yes | Rentz AM, Kahrilas P, Stanghellini V, Tack J, Talley NJ, De La Loge C, Trudeau E, Dubois D, Revicki DA. Development and psychometric evaluation of the patient assessment of upper gastrointestinal symptom severity index (PAGI-SYM) in patients with upper gastrointestinal disorders. Quality of Life Research. 2004 Dec;13:1737-49. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/patient-assessment-of-upper-gastrointestinal-disorders-symptoms-questionnaire | https://link.springer.com/article/10.1007/s11136-004-9567-x | Yes | Wang X, Fei Y, Li W, Liu H, Xiao H, Wu Y, Wang C. Patient-reported outcome measures in functional dyspepsia: a systematic review and COSMIN analysis. BMC gastroenterology. 2023 Sep 19;23(1):316. Smeets FG, Masclee AA, Conchillo JM, Keszthelyi D. Systematic review: disease‐specific instruments to assess gastrointestinal symptoms in functional dyspepsia. Neurogastroenterology & Motility. 2018 Aug;30(8):e13327. |
| Gastrointestinal | Gastrointestinal, general | Structured Assessment of Gastrointestinal Symptoms | SAGIS | Australia | 2017 | To assess the severity and impact of a range of gastrointestinal symptoms, and relevant extra intestinal symptoms. | 22 | 5 | Epigastric pain; Diarrhea and discomfort; Reflux; Nausea/vomiting; Constipation | Yes | Koloski NA, Jones M, Hammer J, von Wulffen M, Shah A, Hoelz H, Kutyla M, Burger D, Martin N, Gurusamy SR, Talley NJ, Holtmann G. The Validity of a New Structured Assessment of Gastrointestinal Symptoms Scale (SAGIS) for Evaluating Symptoms in the Clinical Setting. Dig Dis Sci. 2017 Aug;62(8):1913-1922 | No information | Unknown | https://digestivehealth.org.au/wp-content/uploads/2020/09/SAGIS-ENGLISH.pdf | Yes | Wang X, Fei Y, Li W, Liu H, Xiao H, Wu Y, Wang C. Patient-reported outcome measures in functional dyspepsia: a systematic review and COSMIN analysis. BMC gastroenterology. 2023 Sep 19;23(1):316. | |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Brief Esophageal Dysphagia Questionnaire | BEDQ | USA | 2016 | To assess oesophageal dysphagia symptom frequency and severity, and identify food impaction symptoms. | 10 | No specific domains/dimensions identified | Yes | Taft TH, Riehl M, Sodikoff JB, Kahrilas PJ, Keefer L, Doerfler B, Pandolfino JE. Development and validation of the brief esophageal dysphagia questionnaire. Neurogastroenterol Motil. 2016 Dec;28(12):1854-1860 Cisternas D, Taft T, Carlson DA, Glasinovic E, Monrroy H, Rey P, Hani A, Ardila-Hani A, Leguizamo AM, Bilder C, Ditaranto A, Varela A, Agotegaray J, Remes-Troche JM, Ruiz de León A, Pérez de la Serna J, Marin I, Serra J. Validation and psychometric evaluation of the Spanish version of Brief Esophageal Dysphagia Questionnaire (BEDQ): Results of a multicentric study. Neurogastroenterol Motil. 2021 Apr;33(4):e14025 Cisternas D, Taft T, Carlson DA, Glasinovic E, Monrroy H, Rey P, Hani A, Ardila-Hani A, Leguizamo AM, Bilder C, Ditaranto A, Varela A, Agotegaray J, Remes-Troche JM, de León AR, de la Serna JP, Marin I, Serra J. The Brief Esophageal Dysphagia Questionnaire shows better discriminative capacity for clinical and manometric findings than the Eckardt score: Results from a multicenter study. Neurogastroenterol Motil. 2022 Apr;34(4):e14228 |
No information | Unknown | Dr. Tiffany Taft, Clinical Research Associate, 676 N. St. Clair St., Suite 1400, Chicago, IL 60611, USA. e-mail: ttaft@northwestern.edu | Nil | None identified in March 2025 | None identified in March 2025 | |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Esophageal Hypervigilance and Anxiety Scale | EHAS | USA | 2018 | To measure oesophageal hypervigilance and anxiety, which can drive symptom experience in oesophageal conditions. | 15 | 2 | Symptom-specific anxiety; Symptom-specific hypervigilance | Yes | Taft TH, Triggs JR, Carlson DA, Guadagnoli L, Tomasino KN, Keefer L, Pandolfino JE. Validation of the oesophageal hypervigilance and anxiety scale for chronic oesophageal disease. Aliment Pharmacol Ther. 2018 May;47(9):1270-1277 | No information | Unknown | T. H. Taft, ttaft@northwestern.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Esophageal Symptoms Questionnaire | ESQ | USA | 2011 | To assess dysphagia, globus, and reflux symptoms. | 30 | 3 | Dysphagia; Globus; Reflux | Yes | Kwiatek MA, Kiebles JL, Taft TH, Pandolfino JE, Bové MJ, Kahrilas PJ, Keefer L. Esophageal symptoms questionnaire for the assessment of dysphagia, globus, and reflux symptoms: initial development and validation. Dis Esophagus. 2011 Nov;24(8):550-9 | No information | Unknown | Monika A. Kwiatek, PhD, Northwestern University, Feinberg School of Medicine, Department of Medicine, Division of Gastroenterology, 676 N. St. Clair Street, Suite 1400, Chicago, IL 60611-2951, USA. | Nil | Yes | Bolier EA, Kessing BF, Smout AJ, Bredenoord AJ. Systematic review: questionnaires for assessment of gastroesophageal reflux disease. Diseases of the Esophagus. 2015 Mar 1;28(2):105-20. Patel DA, Sharda R, Hovis KL, Nichols EE, Sathe N, Penson DF, Feurer ID, McPheeters ML, Vaezi MF, Francis DO. Patient-reported outcome measures in dysphagia: a systematic review of instrument development and validation. Diseases of the Esophagus. 2017 May;30(5):1. |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Gastro-oesophageal Reflux Disease Impact Scale | GIS | USA | 2007 | To assess the impacts of gastro-oesophageal reflux disease on patients' everyday lives and aid patient-doctor communication. | 8 | 3 | Burning and pain; Other acid-related symptoms; Impact | Yes | Jones R, Coyne K, Wiklund I. The gastro-oesophageal reflux disease impact scale: a patient management tool for primary care. Aliment Pharmacol Ther. 2007 Jun 15;25(12):1451-9 | Yes | Unknown | AstraZeneca - https://www.astrazeneca.com/patient-reported-outcomes/order-instrument… | Nil | Yes | Bolier EA, Kessing BF, Smout AJ, Bredenoord AJ. Systematic review: questionnaires for assessment of gastroesophageal reflux disease. Diseases of the Esophagus. 2015 Mar 1;28(2):105-20. |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | GERD Symptom Frequency Questionnaire/Gastrointestinal Short Form Questionnaire | GSFQ | Canada | 2003 | To assess the frequency and impact of symptoms of gastroesophageal reflux disease. | 6 | No specific domains/dimensions identified | Yes | Pare P, Meyer F, Armstrong D, Pyzyk M, Pericak D, Goeree R. Validation of the GSFQ, a self-administered symptom frequency questionnaire for patients with gastroesophageal reflux disease. Can J Gastroenterol. 2003;17(5):307-12 | Yes | Unknown | Pierre Pare, Division of Gastroenterology Centre Hospitalier Affilié Universitaire de Québec and Laval University, Canada, pierre.pare@cha.quebec.qc.ca | Nil | Yes | Bolier EA, Kessing BF, Smout AJ, Bredenoord AJ. Systematic review: questionnaires for assessment of gastroesophageal reflux disease. Diseases of the Esophagus. 2015 Mar 1;28(2):105-20. | |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Infant Gastroesophageal Reflux Questionnaire - Revised | I-GERQ-R | USA | 2006 | To assess infantas for gastroesophageal reflux including manifestations, ongoing provocative factors, and possible non reflux causes of symptoms. | 14 | No specific domains/dimensions identified | Kleinman L, Rothman M, Strauss R, Orenstein SR, Nelson S, Vandenplas Y, Cucchiara S, Revicki DA. The infant gastroesophageal reflux questionnaire revised: development and validation as an evaluative instrument. Clinical Gastroenterology and Hepatology. 2006 May 1;4(5):588-96. | Yes | Unknown | Copyright held by University of Pittsburgh | Nil | Yes | Bolier EA, Kessing BF, Smout AJ, Bredenoord AJ. Systematic review: questionnaires for assessment of gastroesophageal reflux disease. Diseases of the Esophagus. 2015 Mar 1;28(2):105-20. | ||
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Nepean Dyspepsia Index | NDI | Australia | 1999 | To assess disease-specific, health-related quality of life in dyspepsia. | 42 | 5 | Tension/sleep; Interference; Eating/drinking; Knowledge/control; Work/study | Yes | Talley NJ, Verlinden M, Jones M. Validity of a new quality of life scale for functional dyspepia: a United States multicenter trial of the Nepean Dyspepsia Index. The American Journal of Gastroenterology 1999; 94(9):2390-2397 Talley, Haque, Wyeth, Stace, Tytgat, Stanghellini, ... & Verlinden. (1999). Development of a new dyspepsia impact scale: the Nepean Dyspepsia Index. Alimentary pharmacology & therapeutics, 13(2), 225-235. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/nepean-dyspepsia-index | Nil | Yes | Wang X, Fei Y, Li W, Liu H, Xiao H, Wu Y, Wang C. Patient-reported outcome measures in functional dyspepsia: a systematic review and COSMIN analysis. BMC gastroenterology. 2023 Sep 19;23(1):316. Smeets FG, Masclee AA, Conchillo JM, Keszthelyi D. Systematic review: disease‐specific instruments to assess gastrointestinal symptoms in functional dyspepsia. Neurogastroenterology & Motility. 2018 Aug;30(8):e13327. |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Paediatric Gastro-oesophageal Symptom and Quality of Life Questionnaire | PGSQ | USA | 2011 | To assess symptoms of gastroesophageal reflux disease and their effects quality of life in paediatric patients, both children (PGSQ-Cp) and adolescents (PGSQ-A). | 37 | 5 (Child); 6 (Adolescent) | Child: Regurgitation; Sleep; Heartburn; Extraesophageal; Total impact; School (applicable only for those attending school). Adolescent: Regurgitation; Heartburn/sleep/general; Extraesophageal; Total impact; School (applicable only for those attending school) | Yes | Kleinman L, Nelson S, Kothari-Talwar S, Roberts L, Orenstein SR, Mody RR, Hassall E, Gold B, Revicki DA, Dabbous O. Development and psychometric evaluation of 2 age-stratified versions of the Pediatric GERD Symptom and Quality of Life Questionnaire. Journal of pediatric gastroenterology and nutrition. 2011 May 1;52(5):514-22. | Yes | Unknown | Takeda Pharmaceuticals International - Reema Mody at reema.mody@tpna.com. | Nil | Yes | Bolier EA, Kessing BF, Smout AJ, Bredenoord AJ. Systematic review: questionnaires for assessment of gastroesophageal reflux disease. Diseases of the Esophagus. 2015 Mar 1;28(2):105-20. |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Quality of Life in Reflux and Dyspepsia | QoLRAD | Australia; Canada; US; UK; France | 1998 | To measure disease-specific quality of life in patients with reflux and dyspepsia. | 25 | 5 | Emotional distress; Sleep disturbance; Vitality; Food/drink problems; Physical/social functioning | Yes | Wiklund IK, Junghard O, Grace E, Talley NJ, Kamm M, Veldhuyzen van Zanten S, Pare P, Chiba N, Leddin DS, Bigard MA, Colin R. Quality of Life in Reflux and Dyspepsia patients. Psychometric documentation of a new disease-specific questionnaire (QOLRAD). The European journal of surgery. Supplement.:= Acta chirurgica. Supplement. 1998 Jan 1(583):41-9. Kulich KR, Wiklund I, Junghard O. Factor structure of the Quality of Life in Reflux and Dyspepsia (QOLRAD) questionnaire evaluated in patients with heartburn predominant reflux disease. Qual Life Res 2003;12:699-708 |
Yes | Unknown | AstraZeneca https://www.astrazeneca.com/patient-reported-outcomes/order-instrument… | Nil | Yes | Chassany O, Holtmann G, Malagelada J, Gebauer U, Doerfler H, Devault K. Systematic review: health‐related quality of life (HRQOL) questionnaires in gastro‐oesophageal reflux disease. Alimentary pharmacology & therapeutics. 2008 Jun;27(11):1053-70. van der Ende-van Loon MC, Stoker A, Nieuwkerk PT, Curvers WL, Schoon EJ. How are we measuring health-related quality of life in patients with a Barrett esophagus? A systematic review on patient-reported outcome measurements. Quality of Life Research. 2022 Jun 1:1-8. |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Reflux Disease Questionnaire | RDQ | USA | 2001 | To facilitate diagnosis of gastroesophageal reflux disease. | 12 | 3 | Heartburn; Acid regurgitation; Dyspepsia | Yes | Shaw MJ, Talley NJ, Beebe TJ, Rockwood T, Carlsson R, Adlis S, Fendrick M, Jones R, Dent J, Bytzer P. Initial validation of a diagnostic questionnaire for gastroesophageal reflux disease. Am J Gastroentereol 2001; 96(1):52-57 | Yes | Unknown | AstraZeneca - https://www.astrazeneca.com/patient-reported-outcomes/order-instrument… | Nil | Yes | Bolier EA, Kessing BF, Smout AJ, Bredenoord AJ. Systematic review: questionnaires for assessment of gastroesophageal reflux disease. Diseases of the Esophagus. 2015 Mar 1;28(2):105-20. Vakil NB, Halling K, Becher A, Ryden A. Systematic review of patient-reported outcome instruments for gastroesophageal reflux disease symptoms. European journal of gastroenterology & hepatology. 2013 Jan 1;25(1):2-14. |
| Gastrointestinal | Gastro-Oesophageal Reflux Disease (GORD) | Reflux Symptom Index | RSI | USA | 2002 | To measure symptoms of reflux. | 9 | 3 | Emotional; Physical; Functional | Yes | Belafsky PC, Postma GN, Koufman JA. Validity and reliability of the reflux symptom index (RSI). J Voice. 2002;16:274- 277 | Yes | Unknown | Dr. Peter Belafsky - - http://www.ucdvoice.org/contact-us/- peterb@ucdvoice.org | Nil | Yes | Francis DO, Patel DA, Sharda R, Hovis K, Sathe N, Penson DF, Feurer ID, McPheeters ML, Vaezi MF. Patient-reported outcome measures related to laryngopharyngeal reflux: a systematic review of instrument development and validation. Otolaryngology–Head and Neck Surgery. 2016 Dec;155(6):923-35. Bolier EA, Kessing BF, Smout AJ, Bredenoord AJ. Systematic review: questionnaires for assessment of gastroesophageal reflux disease. Diseases of the Esophagus. 2015 Mar 1;28(2):105-20. |
| Gastrointestinal | Gastroparesis | Gastroparesis Cardinal Symptom Index | GCSI | USA | 2004 | To assess the severity of symptoms associated with gastroparesis. | 9 | 3 | Post-prandial fullness/early satiety; Nausea/vomiting; Bloating | Yes | Revicki DA, Rentz AM, Dubois D, Kahrilas P, Stanghellini V, Talley NJ, Tack J. Gastroparesis Cardinal Symptom Index (GCSI): development and validation of a patient reported assessment of severity of gastroparesis symptoms. Qual Life Res. 2004;13(4):833-44 | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/gastroparesis-cardinal-symptom-index | Nil | ||
| Gastrointestinal | Inflammatory bowel disease | Crohn's And Ulcerative Colitis Questionnaire | CUCQ | UK | 2015 | To provide a measure of quality of life for patients with inflammatory bowel disease focusing on the last two weeks. | 32 | 4 | Bowel; Psychological; Social; General | Yes | Alrubaiy L, Cheung WY, Dodds P, Hutchings HA, Russell IT, Watkins A, Williams JG. Development of a short questionnaire to assess the quality of life in Crohn’s disease and ulcerative colitis. Journal of Crohn's and Colitis. 2015 Jan 1;9(1):66-76. Alrubaiy L, Sikafi R, Hutchings HA, Arnott I, Williams JG. Further Validation of the Crohn’s and Ulcerative Colitis Questionnaire-32 (CUCQ-32) to Measure the Quality of Life in Patients Treated with Biologics Therapy. Clinics and Practice. 2022 Jun 10;12(3):436-48. |
No information | Unknown | Laith Alrubaiy, Room 220, Grove Building, College of Medicine Swansea University, Swansea SA2 8PP, UK. Tel: +44-780-967-0683; Email: l.alrubaiy@swansea.ac.uk | Nil | Yes | Kim C, Brown FL, Burk C, Anatchkova M, Sargalo N, Kaushik A. Patient experiences in ulcerative colitis: conceptual model and review of patient-reported outcome measures. Quality of Life Research. 2024 May;33(5):1373-87. Chen XL, Zhong LH, Wen Y, Liu TW, Li XY, Hou ZK, Hu Y, Mo CW, Liu FB. Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties. Health and quality of life outcomes. 2017 Dec;15:1-3. |
| Gastrointestinal | Inflammatory bowel disease | Edinburgh Inflammatory Bowel Disease Questionnaire | EIBDQ | UK | 2002 | To measure physical impact and health-related quality of life of inflammatory bowel disease, including the impact of consequent treatment. | 15 | 3 | Disease-specific; Bowel-specific; Information | Yes | Smith GD, Watson R, Palmer KR. Inflammatory bowel disease: developing a short disease specific scale to measure health related quality of life. International journal of nursing studies. 2002 Aug 1;39(6):583-90. | No copYesright or publiclYes available | Unknown | G.D. Smith, g.d.smith@ed.ac.uk | Nil | Yes | Chen XL, Zhong LH, Wen Y, Liu TW, Li XY, Hou ZK, Hu Y, Mo CW, Liu FB. Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties. Health and quality of life outcomes. 2017 Dec;15:1-3. |
| Gastrointestinal | Inflammatory bowel disease | Food-related quality of life in Inflammatory Bowel Disease questionnaire | FR-QoL-29 | UK | 2016 | To assess food-related quality of life and psychosocial factors related to eating and drinking in people with inflammatory bowel disease. | 29 | No specific domains/dimensions identified | Yes | Hughes LD, King L, Morgan M, Ayis S, Direkze N, Lomer MC, Lindsay JO, Whelan K. Food-related Quality of Life in Inflammatory Bowel Disease: Development and Validation of a Questionnaire. J Crohns Colitis. 2016 Feb;10(2):194-201 Brown SC, Whelan K, Frampton C, Wall CL, Gearry RB, Day AS. Food-related quality of life in children and adolescents with Crohn’s disease. Inflammatory Bowel Diseases. 2022 Dec 1;28(12):1838-43. |
Yes | Unknown | Professor Kevin Whelan, kevin.whelan@kcl.ac.uk | Nil | None identified in March 2025 | None identified in March 2025 | |
| Gastrointestinal | Inflammatory bowel disease | IBD Disability Index-Self Report | IBI-DI-self-report | France | 2012 | To measure disability in inflammatory bowel disease according to WHO standards. | 8 | No specific domains/dimensions identified | Yes | Peyrin-Biroulet L, Cieza A, Sandborn WJ, Coenen M, Chowers Y, Hibi T, Kostanjsek N, Stucki G, Colombel JF, International Programme to Develop New Indexes for Crohn's Disease (IPNIC) group. Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health. Gut. 2012 Feb 1;61(2):241-7. Shafer LA, Walker JR, Chhibba T, Ivekovic M, Singh H, Targownik LE, Peyrin-Biroulet L, Gower-Rousseau C, Sarter H, Bernstein CN. Independent validation of a self-report version of the IBD Disability Index (IBDDI) in a population-based cohort of IBD patients. Inflammatory bowel diseases. 2018 Mar 19;24(4):766-74. Paulides E, Kim C, Frampton C, Gearry RB, Eglinton T, Leong RW, de Boer NK, Mulder CJ, McCombie AM. Validation of the inflammatory bowel disease disability index for self‐report and development of an item‐reduced version. Journal of gastroenterology and hepatology. 2019 Jan;34(1):92-102. Storan D, McDermott E, Moloney J, Keenan L, Stack R, Sheridan J, Doherty G, Cullen G, McHugh L, Mulcahy HE. Inflammatory Bowel Disease Disability Index is a valid and reliable measure of disability in an English-speaking hospital practice and predicts long-term requirement for treatment escalation. Frontline Gastroenterology. 2024 Mar 1;15(2):130-6. |
No information | Unknown | Professor Jean-Frédéric Colombel, Département d'Hépato-gastroentérologie, Hôpital Claude Huriez, Centre Hospitalier Universitaire Régional, 59037 Lille, France; jean-frederic.colombel@chru-lille.fr | https://onlinelibrary.wiley.com/doi/full/10.1111/jgh.14496?casa_token=t… | Yes | van Andel EM, Koopmann BD, Crouwel F, Noomen CG, de Boer NK, van Asseldonk DP, Mokkink LB. Systematic review of development and content validity of patient-reported outcome measures in inflammatory bowel disease: do we measure what we measure?. Journal of Crohn's and Colitis. 2020 Sep 1;14(9):1299-315. | |
| Gastrointestinal | Inflammatory bowel disease | IBD Disability Score | IBD-DS | Australia | 2013 | To assess disability in patients with inflammatory bowel disease including those with Crohn's disease and ulcerative colitis. | 49 | 6 | Support; Gastro intestinal-related symptoms; Self care; Major life activities; Mental-related symptoms; Environmental-related issues | Yes | Allen PB, Kamm MA, Peyrin‐Biroulet L, Studd C, Mc Dowell C, Allen BC, Connell WR, De Cruz PP, Bell SJ, Elliot RP, Brown S. Development and validation of a patient‐reported disability measurement tool for patients with inflammatory bowel disease. Alimentary pharmacology & therapeutics. 2013 Feb;37(4):438-44. | No information | Unknown | Prof. M. A. Kamm, St Vincent's Hospital, Victoria Parade, Fitzroy 3065, Melbourne, Australia. E-mail: mkamm@unimelb.edu.au | https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12187?casa_token=S… | None identified in March 2025 | None identified in March 2025 |
| Gastrointestinal | Inflammatory bowel disease | IBD-Control | IBD-C | UK | 2014 | To capture disease control from the perspective of patients with inflammatory bowel disease over the preceding 2 weeks. | 14 | 2 | Health-related quality of life; Treatment domains | Yes | Bodger K, Ormerod C, Shackcloth D, Harrison M. Development and validation of a rapid, generic measure of disease control from the patient's perspective: the IBD-control questionnaire. Gut. 2014 Jul 1;63(7):1092-102. Gebeyehu GG, Taylor F, Dobson L, Cummings JF, Bloom S, Kennedy NA, Christiansen P, Bodger K. Validation of the IBD-Control Questionnaire across different sociodemographic and clinical subgroups: secondary analysis of a nationwide electronic survey. Journal of Crohn's and Colitis. 2024 Feb 1;18(2):275-85. |
No copYesright or publiclYes available | Unknown | https://gut.bmj.com/content/gutjnl/suppl/2013/10/09/gutjnl-2013-305600… | Yes | van Andel EM, Koopmann BD, Crouwel F, Noomen CG, de Boer NK, van Asseldonk DP, Mokkink LB. Systematic review of development and content validity of patient-reported outcome measures in inflammatory bowel disease: do we measure what we measure?. Journal of Crohn's and Colitis. 2020 Sep 1;14(9):1299-315. | |
| Gastrointestinal | Inflammatory bowel disease | Inflammatory Bowel Disease Fatigue patient self-assessment scale | IBD-F | UK | 2014 | To measure fatigue specific to the needs and experiences of people with Inflammatory Bowel Disease. | 35 | 2 | Fatigue severity; Impact of fatigue | Yes | Czuber-Dochan W , Norton C, Bassett P, et al. Development and psychometric testing of inflammatory bowel disease fatigue (IBD-F) patient self-assessment scale. J Crohns Colitis.2014;8:1398–1406. | No information | Unknown | https://crohnsandcolitis.org.uk/media/a5odimwm/ibd-fatigue-scale-final_30-08-2013.pdf | None identified in March 2025 | None identified in March 2025 | |
| Gastrointestinal | Inflammatory bowel disease | Inflammatory Bowel Disease Quality Of Life Questionnaire | IBDQOL/IBDQ-36 | Canada | 1992 | To evaluate quality of life in patients with inflammatory bowel disease over the preceding month. | 36 | 5 | Systemic symptoms; Bowel symptoms; Functional impairment; Social impairment; Emotional function | Yes | Love JR, Irvine EJ, Fedorak RN. Quality of life in inflammatory bowel disease. Journal of clinical gastroenterology. 1992 Jan 1;14(1):15-9. | Yes | Unknown | Copyright owned by Journal of Clinical Gastroenterology | Nil | Yes | Dhruva Rao PK, Davies M, Price PE, Torkington J. Crohn's disease: systematic review of assessment of disease severity and its relevance to surgery. Colorectal Disease. 2007 Oct;9(8):678-85. van Andel EM, Koopmann BD, Crouwel F, Noomen CG, de Boer NK, van Asseldonk DP, Mokkink LB. Systematic review of development and content validity of patient-reported outcome measures in inflammatory bowel disease: do we measure what we measure?. Journal of Crohn's and Colitis. 2020 Sep 1;14(9):1299-315. Gater, A., Kitchen, H., Heron, L., Pollard, C., Håkan-Bloch, J., Højbjerre, L., Hansen, B.B. and Strandberg-Larsen, M., 2015. Development of a conceptual model evaluating the humanistic and economic burden of Crohn’s disease: implications for patient-reported outcomes measurement and economic evaluation. Expert Review of Pharmacoeconomics & Outcomes Research, 15(4), pp.643-656. |
| Gastrointestinal | Inflammatory bowel disease | Inflammatory Bowel Disease Questionnaire | IBDQ | Canada | 1989 | To measure quality of life in patients with inflammatory bowel disease. | 32 | 4 | Bowel symptoms; Systemic symptoms; Emotional function; Social function | Yes | Guyatt G, Mitchell A, Irvine EJ, Singer J, Williams N, Goodacre R, Tompkins C. A new measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology. 1989 Feb 1;96(2):804-10. Irvine EJ, Zhou Q, Thompson AK. The Short Inflammatory Bowel Disease Questionnaire: A Quality of Life Instrument for Community Physicians Managing Inflammatory Bowel Disease. American Journal of Gastroenterology (Springer Nature). 1996 Aug 1;91(8). Irvine EJ. Development and subsequent refinement of the inflammatory bowel disease questionnaire: a quality-of-life instrument for adult patients with inflammatory bowel disease. Journal of pediatric gastroenterology and nutrition. 1999 Apr 1;28(4):S23-7. Pallis AG, Mouzas IA, Vlachonikolis IG. The inflammatory bowel disease questionnaire: a review of its national validation studies. Inflammatory bowel diseases. 2004 May 1;10(3):261-9. |
Yes | Unknown | https://research.mcmaster.ca/industry-investors/technologies-available-for-licensing/request-for-license/ | Nil | Yes | Chen XL, Zhong LH, Wen Y, Liu TW, Li XY, Hou ZK, Hu Y, Mo CW, Liu FB. Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties. Health and quality of life outcomes. 2017 Dec;15:1-3. Hawkins AT, Rothman RL, Geiger TM, Canedo JR, Edwards-Hollingsworth K, LaNeve DC, Penson DF. Patient-reported outcome measures in colon and rectal surgery: a systematic review and quality assessment. Diseases of the Colon & Rectum. 2020 Aug 1;63(8):1156-67. Kim C, Brown FL, Burk C, Anatchkova M, Sargalo N, Kaushik A. Patient experiences in ulcerative colitis: conceptual model and review of patient-reported outcome measures. Quality of Life Research. 2024 May;33(5):1373-87. |
| Gastrointestinal | Inflammatory bowel disease | Inflammatory Bowel Disease Symptom Inventory | IBDSI | Canada | 2019 | To measure a broad range of symptoms of inflammatory bowel disease. | 38 | 5 | Bowel symptoms; Abdominal discomfort; Fatigue; Bowel complications; Systemic complications | Yes | Sexton KA, Walker JR, Targownik LE, Graff LA, Haviva C, Beatie BE, Petty SK, Bernstein MT, Singh H, Miller N, Bernstein CN. The Inflammatory Bowel Disease Symptom Inventory: A Patient-report Scale for Research and Clinical Application. Inflamm Bowel Dis. 2019 Jul 17;25(8):1277-1290 | No information | Unknown | Charles N. Bernstein, Department of Internal Medicine (Gastroenterology), University of Manitoba, 804F-715 McDermot Avenue, University of Manitoba, Winnipeg, MB R3E3P4, Canada. E-mail: Charles. Bernstein@umanitoba.ca. | https://oup.silverchair-cdn.com/oup/backfile/Content_public/Journal/ibdjournal/25/8/10.1093_ibd_izz038/1/izz038_suppl_appendix-a.pdf?Expires=1742270274&Signature=zAQH9rbX7-rLH0GLm2Br0GfCNDEXwtBpWFz2CltbydJKyv20lz5KKhAB3NwzqejZOeMud2SY0col3XOg3hYBxHKeMULjeqw6gj4GHXG9aPKsSgzw0pFD3ctTawLKDWr5TIYGwM-h9UgkxLJjYuBAynqFQwi09I4pxtHvGImOW7ISwPHaZCdf2bJ3EhNtnVcOPHw-Q7Yq1YFt4I-FG2g2LeAiuiE5-su4nzHhDzk~yDgSp2PhssreRwz-8wTGaaWp5UAJdoYtF3cR8A-ZdzY0lJ34qzBdcP1GBKTQkZTW1kbmiGHWrKmT7q5S0oudZbUBpsO0KzJuF2G-GNHPkv1VPg__&Key-Pair-Id=APKAIE5G5CRDK6RD3PGA | Yes | van Andel EM, Koopmann BD, Crouwel F, Noomen CG, de Boer NK, van Asseldonk DP, Mokkink LB. Systematic review of development and content validity of patient-reported outcome measures in inflammatory bowel disease: do we measure what we measure?. Journal of Crohn's and Colitis. 2020 Sep 1;14(9):1299-315. |
| Gastrointestinal | Inflammatory bowel disease | Irritable Bowel Syndrome - Diarrhea Daily Symptom Diary And Event Log | IBS-D Daily Symptom Diary and Event Log | USA | 2016 | To evaluate treatment benefit in diarrhea-predominant irritable bowel syndrome by assessing symptoms and events, including immediacy of need, consistency and completeness of emptying for each bowel movement. | Daily Symptom Diary: 6; Symptom event log: 4 | No specific domains/dimensions identified | Yes | Rosa K, Delgado-Herrera L, Zeiher B, Banderas B, Arbuckle R, Spears G, Hudgens S. Psychometric assessment of the IBS-D daily symptom diary and symptom event log. Quality of Life Research. 2016 Dec;25:3197-208. Delgado-Herrera L, Banderas B, Ojo O, Kothari R, Zeiher B. Diarrhea-predominant irritable bowel syndrome: creation of an electronic version of a patient-reported outcome instrument by conversion from a pen-and-paper version and evaluation of their equivalence. Patient Related Outcome Measures. 2017 Jul 18:83-95. Delgado-Herrera L, Lasch K, Zeiher B, Lembo AJ, Drossman DA, Banderas B, Rosa K, Lademacher C, Arbuckle R. Evaluation and performance of a newly developed patient-reported outcome instrument for diarrhea-predominant irritable bowel syndrome in a clinical study population. Therapeutic Advances in Gastroenterology. 2017 Sep;10(9):673-87. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/irritable-bowel-syndrome-diarrhea-daily-symptom-diary-and-event-log | Nil | None identified in March 2025 | None identified in March 2025 | |
| Gastrointestinal | Inflammatory bowel disease | Manitoba Inflammatory Bowel Disease Index | MIBDI | Canada | 2009 | To measure disease activity over the previous 6 months in patients with inflammatory bowel disease. | 1 | No specific domains/dimensions identified | Yes | Clara I, Lix LM, Walker JR, Graff LA, Miller N, Rogala L, Rawsthorne P, Bernstein CN. The Manitoba IBD Index: evidence for a new and simple indicator of IBD activity. Official journal of the American College of Gastroenterology| ACG. 2009 Jul 1;104(7):1754-63. | No copYesright or publiclYes available | Unknown | Charles N Bernstein, cbernst@cc.umanitoba.ca | Nil | Yes | Kim WJ, Iskandarani M, Manzo CA, Pellino G, Gallostra MM, Tekkis PP, Celentano V, Kontovounisios C. Patient-reported outcome measures and surgery for Crohn’s disease: systematic review. BJS open. 2023 Oct;7(5):zrad098. van Andel EM, Koopmann BD, Crouwel F, Noomen CG, de Boer NK, van Asseldonk DP, Mokkink LB. Systematic review of development and content validity of patient-reported outcome measures in inflammatory bowel disease: do we measure what we measure?. Journal of Crohn's and Colitis. 2020 Sep 1;14(9):1299-315. |
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| Gastrointestinal | Inflammatory bowel disease | Rating Form Of IBD Patient Concerns | RFIPC | USA | 1991 | To measure the worries and concerns associated with inflammatory bowel disease and its treatment. | 25 | 4 | Impact of disease; Sexual intimacy; Complications of disease; Body stigma | Yes | Drossman DA, Leserman JA, Li ZM, Mitchell CM, Zagami EA, Patrick DL. The rating form of IBD patient concerns: a new measure of health status. Psychosomatic medicine. 1991 Nov 1;53(6):701-12. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/rating-form-of-inflammatory-bowel-disease-patient-concerns | Nil | Yes | Chen XL, Zhong LH, Wen Y, Liu TW, Li XY, Hou ZK, Hu Y, Mo CW, Liu FB. Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties. Health and quality of life outcomes. 2017 Dec;15:1-3. Alrubaiy L, Rikaby I, Dodds P, Hutchings HA, Williams JG. Systematic review of health-related quality of life measures for inflammatory bowel disease. Journal of Crohn's and Colitis. 2015 Mar 1;9(3):284-92. |
| Gastrointestinal | Inflammatory Bowel Disease | Short Health Scale | SHS | Sweden | 2006 | To measure symptom burden, social function, disease-related worry and general wellbeing in patients with inflammatory bowel disease. | 4 | 4 | Symptoms; Activities; Worry; Wellbeing | Yes | Hjortswang H, Järnerot G, Curman B, Sandberg-Gertzén H, Tysk C, Blomberg B, Almer S, Ström M. The Short Health Scale: a valid measure of subjective health in ulcerative colitis. Scandinavian journal of gastroenterology. 2006 Jan 1;41(10):1196-203. McDermott E, Keegan D, Byrne K, Doherty GA, Mulcahy HE. The Short Health Scale: a valid and reliable measure of health related quality of life in English speaking inflammatory bowel disease patients. Journal of Crohn's and Colitis. 2013 Sep 1;7(8):616-21. |
Yes | Unknown | Dr. Henrik Hjortswang | Nil | None identified in March 2025 | None identified in March 2025 |
| Gastrointestinal | Irritable Bowel Syndrome | Diary for Irritable Bowel Syndrome Symptoms-Constipation | DIBSS-C | USA | 2020 | To assess the core signs and symptoms of irritable bowel syndrome with constipation, including bowel movement-related symptoms and abdominal symptom severity. | 7 | No specific domains/dimensions identified | Yes | Fehnel SE, Ervin CM, Carson RT, Rigoni G, Lackner JM, Coons SJ; Critical Path Institute Patient-Reported Outcome Consortium’s Irritable Bowel Syndrome Working Group. Development of the Diary for Irritable Bowel Syndrome Symptoms to Assess Treatment Benefit in Clinical Trials: Foundational Qualitative Research. Value Health. 2017 Apr;20(4):618-626 Coon CD, Hanlon J, Abel JL, Lundy JJ, Carson RT, Reasner DS. Psychometric analysis of the abdominal score from the Diary for Irritable Bowel Syndrome Symptoms–Constipation using phase IIb clinical trial data. Value in Health. 2020 Mar 1;23(3):362-9. |
No information | Unknown | J. Jason Lundy, jlundy@outcometrix.com | Nil | Yes | Lee VV, Lau NY, Xi DJ, Truong AT, Blasiak A, Siah KT, Ho D. A systematic review of the development and psychometric properties of constipation-related patient-reported outcome measures: opportunities for digital health. Journal of Neurogastroenterology and Motility. 2022 Jul 7;28(3):376. | |
| Gastrointestinal | Irritable bowel syndrome | Functional Digestive Disorders Quality Of Life Questionnaire | FDDQL | France; Germany; UK | 1999 | To assess quality of life in patients with dyspepsia and inflammatory bowel syndrome. | 43 | 8 | Daily activities; Anxiety; Diet; Sleep; Discomfort; Coping with disease; Control of disease; Stress (triggering factors) | Yes | Chassany O, Marquis P, Scherrer B, Read NW, Finger T, Bergmann JF, Fraitag B, Geneve J, Caulin C. Validation of a specific quality of life questionnaire for functional digestive disorders. Gut. 1999 Apr 1;44(4):527-33. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/quality-of-life-questionnaire-for-functional-digestive-disorders | Nil | Yes | Lee J, Lee EH, Moon SH. A systematic review of measurement properties of the instruments measuring health-related quality of life in patients with irritable bowel syndrome. Quality of Life Research. 2016 Dec;25:2985-95. |
| Gastrointestinal | Irritable bowel syndrome | Gastrointestinal Symptom Rating Scale | GSRS | Sweden | 1988 | To assess the frequency, intensity, duration and impact on daily life of gastrointestinal symptoms in patients with irritable bowel syndrome and peptic ulcer disease. | 15 | 5 | Reflux; Abdominal pain; Indigestion; Diarrhoea; Constipation | Yes | Svedlund J, Sjödin I, Dotevall G. GSRS—a clinical rating scale for gastrointestinal symptoms in patients with irritable bowel syndrome and peptic ulcer disease. Digestive diseases and sciences. 1988 Feb;33:129-34. Revicki DA, Wood M, Wiklund I, Crawley J. Reliability and validity of the Gastrointestinal Symptom Rating Scale in patients with gastroesophageal reflux disease. Quality of life research. 1997 Jan;7:75-83. |
Yes | Unknown | https://www.astrazeneca.com/patient-reported-outcomes/gastrointestinal.html | https://link.springer.com/article/10.1007/bf01535722 | Yes | Bijkerk CJ, De Wit NJ, Muris JW, Jones RH, Knottnerus JA, Hoes AW. Outcome measures in irritable bowel syndrome: comparison of psychometric and methodological characteristics. Official journal of the American College of Gastroenterology| ACG. 2003 Jan 1;98(1):122-7. Smeets FG, Masclee AA, Conchillo JM, Keszthelyi D. Systematic review: disease‐specific instruments to assess gastrointestinal symptoms in functional dyspepsia. Neurogastroenterology & Motility. 2018 Aug;30(8):e13327. Wang X, Fei Y, Li W, Liu H, Xiao H, Wu Y, Wang C. Patient-reported outcome measures in functional dyspepsia: a systematic review and COSMIN analysis. BMC gastroenterology. 2023 Sep 19;23(1):316. |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome Cognitive Affective Scale | IBS-CAS | USA | 2017 | To assess distinct cognitive-affective processes that may underlie physical and psychological distress associated with irritable bowel syndrome. | 15 | 3 | Pain catastrophisation; Visceral hypervigilance; Extraintestinal hypervigilance | Yes | Ballou S, Keefer L. Development of the Irritable Bowel Syndrome Cognitive Affective Scale: a brief self-report measure for clinical and research settings. European Journal of Gastroenterology & Hepatology. 2017 Jul 1;29(7):849-54. | No information | Unknown | Sarah Ballou, sballou@bidmc.harvard.edu | None identified in March 2025 | None identified in March 2025 | |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome Impact Scale | IBS-IS | USA | 2005 | To capture the impact of irritable bowel syndrome and its treatment on patient lives. | 26 | 5 | Fatigue; Impact on daily activities; Sleep disturbance; Emotional distress; Eating habits | Yes | Longstreth GF, Bolus R, Naliboff B, Chang L, Kulich KR, Carlsson J, Mayer EA, Naesdal J, Wiklund IK. Impact of irritable bowel syndrome on patients' lives: development and psychometric documentation of a disease-specific measure for use in clinical trials. European journal of gastroenterology & hepatology. 2005 Apr 1;17(4):411-20. | No information | Unknown | George F Longstreth, George.F.Longstreth@kp.org | https://journals.lww.com/eurojgh/fulltext/2005/04000/Diet_in_the_Irrita… | Yes | Lee J, Lee EH, Moon SH. A systematic review of measurement properties of the instruments measuring health-related quality of life in patients with irritable bowel syndrome. Quality of Life Research. 2016 Dec;25:2985-95. |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome Quality Of Life Questionnaire | IBSQoL | USA | 1997 | To measure the impact of irritable bowel syndrome on dimensions of quality of life. | 30 | 10 | Emotional health; Mental health; Health belief; Sleep; Energy; Physical functioning; Diet; Social role; Sexual relations | Yes | Hahn BA, Kirchdoerfer LJ, Fullerton S, Mayer E. Evaluation of a new quality of life questionnaire for patients with irritable bowel syndrome. Alimentary pharmacology & therapeutics. 1997 Jun;11(3):547-52. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/irritable-bowel-syndrome-quality-of-life-questionnaire | Nil | Yes | Lee J, Lee EH, Moon SH. A systematic review of measurement properties of the instruments measuring health-related quality of life in patients with irritable bowel syndrome. Quality of Life Research. 2016 Dec;25:2985-95. |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome Questionnaire | IBSQ/IBS-HRQoL | Canada | 1998 | To assess quality of life in people with irritable bowel syndrome over the preceding 2 weeks. | 26 | 4 | Bowel symptoms; Fatigue; Activity limitations; Emotional dysfunction | Yes | Wong E, Guyatt GH, Cook DJ, Griffith LE, Irvine EJ. Development of a questionnaire to measure quality of life in patients with irritable bowel syndrome. The European Journal of surgery. Supplement.:= Acta chirurgica. Supplement. 1998 Jan 1(583):50-6. | No information | Unknown | E. Wong, Department of Medicine, University of Alberta, Edmonton, Canada | Nil | Yes | Lee J, Lee EH, Moon SH. A systematic review of measurement properties of the instruments measuring health-related quality of life in patients with irritable bowel syndrome. Quality of Life Research. 2016 Dec;25:2985-95. |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome-36 | IBS-36 | Canada | 2002 | To measure quality of life in patients with irritable bowel syndrome. | 36 | No specific domains/dimensions identified | Yes | Groll D, Vanner SJ, Depew WT, DaCosta LR, Simon JB, Groll A, Roblin N, Paterson WG. The IBS-36: a new quality of life measure for irritable bowel syndrome. Official journal of the American College of Gastroenterology| ACG. 2002 Apr 1;97(4):962-71. | No copYesright or publiclYes available | Unknown | William G Paterson, MD, GI Division, Hotel Dieu Hospital, 166 Brock Street, Kingston, Ontario, Canada, K7L 5G2. | Nil | Yes | Lee J, Lee EH, Moon SH. A systematic review of measurement properties of the instruments measuring health-related quality of life in patients with irritable bowel syndrome. Quality of Life Research. 2016 Dec;25:2985-95. | |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome–Quality Of Life | IBS-QOL | USA | 1998 | To measure quality of life specific to patients with irritable bowel syndrome for use to assess the impact of the syndrome and its treatment. | 34 | 8 | Dysphoria; Interference with activity; Body image; Health worry; Food avoidance; Social reaction; Sexual; Relationship | Yes | Patrick DL, Drossman DA, Frederick IO, Dicesare J, Puder KL. Quality of life in persons with irritable bowel syndrome (development and validation of a new measure). Digestive diseases and sciences. 1998 Feb;43:400-11. Drossman DA, Patrick DL, Whitehead WE, Toner BB, Diamant NE, Hu Y, Jia H, Bangdiwala SI. Further validation of the IBS-QOL: a disease-specific quality-of-life questionnaire. Official journal of the American College of Gastroenterology| ACG. 2000 Apr 1;95(4):999-1007. Andrae DA, Patrick DL, Drossman DA, Covington PS. Evaluation of the Irritable Bowel Syndrome Quality of Life (IBS-QOL) questionnaire in diarrheal-predominant irritable bowel syndrome patients. Health and quality of life outcomes. 2013 Dec;11:1-2. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/irritable-bowel-syndrome-qu… | Nil | Yes | Lee J, Lee EH, Moon SH. A systematic review of measurement properties of the instruments measuring health-related quality of life in patients with irritable bowel syndrome. Quality of Life Research. 2016 Dec;25:2985-95. |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome Severity Scoring System | IBS-SSS | UK | 1997 | To measure the intensity of irritable bowel syndrome symptoms over a 10 day period. | 5 | 5 | Severity of abdominal pain; Frequency of abdominal pain; Severity of abdominal distension; Dissatisfaction with bowel habits; Interference with quality of life | Yes | Francis CY, Morris J, Whorwell PJ. The irritable bowel severity scoring system: a simple method of monitoring irritable bowel syndrome and its progress. Alimentary pharmacology & therapeutics. 1997 Apr;11(2):395-402. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/irritable-bowel-syndrome-se… | https://onlinelibrary.wiley.com/doi/epdf/10.1046/j.1365-2036.1997.142318000.x | Yes | Lambert K, Stanford J. Patient-Reported Outcome and Experience Measures Administered by Dietitians in the Outpatient Setting: Systematic Review. Canadian Journal of Dietetic Practice and Research. 2022 Jan 11;83(2):91-101. |
| Gastrointestinal | Liver disease, chronic | Chronic Liver Disease Questionnaire | CLDQ | USA | 1999 | To assess health-related quality of life in patients with chronic liver disease. | 29 | 6 | Fatigue; Activity; Emotional function; Abdominal symptoms; Systemic symptoms; Worry | Yes | Younossi ZM, Guyatt G, Kiwi M, Boparai N, King D. Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver disease. Gut. 1999 Aug 1;45(2):295-300. | Yes | Unknown | https://www.liverpro.org/contact-us/ | https://gut.bmj.com/content/gutjnl/45/2/295.full.pdf | Yes | Ispas SA, Iliescu D, Ren L, So S, Toy M. Psychometric Tests for Hepatitis B–A Systematic Review. Evaluation & the Health Professions. 2024 Sep;47(3):235-53. McSweeney L, Breckons M, Fattakhova G, Oluboyede Y, Vale L, Ternent L, Balp MM, Doward L, Brass CA, Beyer F, Sanyal A. Health-related quality of life and patient-reported outcome measures in NASH-related cirrhosis. Jhep Reports. 2020 Jun 1;2(3):100099. Younossi Z, Aggarwal P, Shrestha I, Fernandes J, Johansen P, Augusto M, Nair S. The burden of non-alcoholic steatohepatitis: A systematic review of health-related quality of life and patient-reported outcomes. JHEP Reports. 2022 Sep 1;4(9):100525. |
| Gastrointestinal | Liver Disease, Non-alcoholic Fatty | Chronic Liver Disease Questionnaire for NASH (CLDQ-NASH) | CLDQ-NASH | USA | 2017 | To measure patient-reported outcome and quality of life in patients with non-alcoholic fatty liver disease and non-alcoholic steatohepatitis. | 36 | 6 | Abdominal symptoms; Activity/energy; Emotional health; Fatigue; Systemic symptom: Worry | Yes | Younossi ZM, Stepanova M, Henry L, Racila A, Lam B, Pham HT, Hunt S. A disease‐specific quality of life instrument for non‐alcoholic fatty liver disease and non‐alcoholic steatohepatitis: CLDQ‐NAFLD. Liver International. 2017 Aug;37(8):1209-18. Younossi ZM, Stepanova M, Younossi I, Racila A. Validation of Chronic Liver Disease Questionnaire for Nonalcoholic Steatohepatitis in Patients With Biopsy-Proven Nonalcoholic Steatohepatitis. Clin Gastroenterol Hepatol. 2019 Sep;17(10):2093-2100.e3 |
Yes | Unknown | ZM Younossi | Nil | Yes | McSweeney L, Breckons M, Fattakhova G, Oluboyede Y, Vale L, Ternent L, Balp MM, Doward L, Brass CA, Beyer F, Sanyal A. Health-related quality of life and patient-reported outcome measures in NASH-related cirrhosis. Jhep Reports. 2020 Jun 1;2(3):100099. |
| Gastrointestinal | Liver Disease, Non-alcoholic Fatty | Non-Alcoholic Steatohepatitis (NASH)-CHECK | NASH-CHECK | 17 countries including: North and South America; Europe; Asia; and Australia | 2023 | To evaluate symptoms and health-related quality of life for patients with non-alcoholic steatohepatitis. | 28 | 9 | Cognitive symptoms; Activity limitations; Social impact; Emotional impact; Abdominal pain; Abdominal bloating; Fatigue; Sleep; Itchy Skin | Yes | Twiss J, Whalley D, Doward L, Balp MM, Brass CA, Cryer D, Sanyal A, Anstee QM. Validation of NASH-CHECK: a novel patient-reported outcome measure for nonalcoholic steatohepatitis. Journal of Patient-Reported Outcomes. 2023 Jul 14;7(1):69. | No information | Unknown | James Twiss, jtwiss@rti.org | Nil | None identified in March 2025 | None identified in March 2025 |
| Gastrointestinal | Liver diseases, general | Liver Disease Quality Of Life Questionnaire | LDQOL | USA | 2000 | To assess functional status and sense of wellbeing in individuals with chronic liver disease. | 111 | 12 | Symptoms of liver disease; Effects of liver disease; Concentration; Memory; Sexual functioning; Sexual problems; Sleep; Loneliness; Hopelessness; Quality of social interaction; Health distress; Self-perceived stigma of liver disease | Yes | Gralnek IM, Hays RD, Kilbourne A, Rosen HR, Keeffe EB, Artinian L, Kim S, Lazarovici D, Jensen DM, Busuttil RW, Martin P. Development and evaluation of the liver disease quality of life instrument in persons with advanced, chronic liver disease—the LDQOL 1.0. Official journal of the American College of Gastroenterology| ACG. 2000 Dec 1;95(12):3552-65. Kanwal F, Spiegel BM, Hays RD, Durazo F, Han SB, Saab S, Bolus R, Kim SJ, Gralnek IM. Prospective validation of the short form liver disease quality of life instrument. Alimentary pharmacology & therapeutics. 2008 Nov;28(9):1088-101. |
Yes | Unknown | Ian M Gralnek, MD, MSHS, VA Greater Los Angeles Health Care System Division of Gastroenterology and UCLA School of Medicine Division of Digestive Diseases, 11301 Wilshire Boulevard, CURE Building 115 Room 318, Los Angeles, CA 90073 | Nil | Yes | Jay CL, Butt Z, Ladner DP, Skaro AI, Abecassis MM. A review of quality of life instruments used in liver transplantation. Journal of hepatology. 2009 Nov 1;51(5):949-59. McSweeney L, Breckons M, Fattakhova G, Oluboyede Y, Vale L, Ternent L, Balp MM, Doward L, Brass CA, Beyer F, Sanyal A. Health-related quality of life and patient-reported outcome measures in NASH-related cirrhosis. Jhep Reports. 2020 Jun 1;2(3):100099. |
| Gastrointestinal | Paediatric Inflammatory Bowel Disease | IMPACT III | IMPACT III | Canada | 1999 | To measure disease-related quality of life in children and adolescents with Inflammatory Bowel Disease, including Crohn’s Disease and ulcerative colitis. | 33 | 6 | Bowel; Body image; Functional/social impairment; Emotional impairment; Tests/treatments; Systemic impairment | Yes | Griffiths AM, Nicholas D, Smith C, Munk M, Stephens D, Durno C, Sherman PM. Development of a quality-of-life index for pediatric inflammatory bowel disease: dealing with differences related to age and IBD type. Journal of pediatric gastroenterology and nutrition. 1999 Apr 1;28(4):S46-52. Loonen HJ, Grootenhuis MA, Last BF, de Haan RJ, Bouquet J, Derkx BH. Measuring quality of life in children with inflammatory bowel disease: the impact-II (NL). Quality of Life Research. 2002 Feb;11:47-56. Otley A, Smith C, Nicholas D, Munk M, Avolio J, Sherman PM, Griffiths AM. The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. Journal of pediatric gastroenterology and nutrition. 2002 Oct 1;35(4):557-63. |
Yes | Unknown | https://mirapeds.ca/miraresearch/impact/ | Nil | Yes | Chen XL, Zhong LH, Wen Y, Liu TW, Li XY, Hou ZK, Hu Y, Mo CW, Liu FB. Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties. Health and quality of life outcomes. 2017 Dec;15:1-3. Davis E, Waters E, Mackinnon A, Reddihough D, Graham HK, Mehmet-Radji O, Boyd R. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Developmental medicine and child neurology. 2006 Apr;48(4):311-8. |
| Gastrointestinal | Ulcerative colitis | Padova Inflammatory Bowel Disease Quality Of Life | PIBDQL | Italy | 1995 | To measure quality of life in patients with inflammatory bowel disease, including patients receiving surgery. | 29 | 4 | Intestinal symptoms; Systemic symptoms; Emotional function; Social function | Yes | Martin A, Leone L, Fries W, Naccarato R. Quality of life in inflammatory bowel disease. The Italian journal of gastroenterology. 1995 Oct 1;27(8):450-4. Scarpa M, Victor CJ, O’Connor BI, Cohen Z, McLeod RS. Validation of an English version of the Padova quality of life instrument to assess quality of life following ileal pouch anal anastomosis. Journal of Gastrointestinal Surgery. 2009 Mar 1;13(3):416-22. |
No information | Unknown | Robin McLeod, rmcleod@mtsinai.on.ca | Nil | Yes | van Andel EM, Koopmann BD, Crouwel F, Noomen CG, de Boer NK, van Asseldonk DP, Mokkink LB. Systematic review of development and content validity of patient-reported outcome measures in inflammatory bowel disease: do we measure what we measure?. Journal of Crohn's and Colitis. 2020 Sep 1;14(9):1299-315. Chen XL, Zhong LH, Wen Y, Liu TW, Li XY, Hou ZK, Hu Y, Mo CW, Liu FB. Inflammatory bowel disease-specific health-related quality of life instruments: a systematic review of measurement properties. Health and quality of life outcomes. 2017 Dec;15:1-3. |
| Gastrointestinal | Ulcerative colitis | Social Impact Of Chronic Conditions - Inflammatory Bowel Disease | SICC-IBD | UK | 2012 | To assess social disability in patients with inflammatory bowel disease across education, work, earnings and personal relationships. | 8 | No specific domains/dimensions identified | Yes | Smith JJ, Netuveli G, Sleight SP, Das P, Tekkis PP, Gabe SM, Clark SK, Nicholls RJ. Development of a social morbidity score in patients with chronic ulcerative colitis as a potential guide to treatment. Colorectal Disease. 2012 May;14(5):e250-7. | No information | Unknown | R. J. Nicholls, j.nicholls@imperial.ac.uk | https://onlinelibrary.wiley.com/doi/full/10.1111/j.1463-1318.2012.02880… | Yes | Alrubaiy L, Rikaby I, Dodds P, Hutchings HA, Williams JG. Systematic review of health-related quality of life measures for inflammatory bowel disease. Journal of Crohn's and Colitis. 2015 Mar 1;9(3):284-92. | |
| Gastrointestinal | Ulcerative colitis | TUMMY-Ulcerative Colitis Index | TUMMY-UC Index | Canada; USA; UK; Israel | 2023 | To measure patient-reported symptoms of paediatric ulcerative colitis. | 8 | No specific domains/dimensions identified | Yes | Marcovitch L, Nissan A, Mack D, Otley A, Hussey S, Mclean B, Lewis M, Croft N, Barakat FM, Griffiths AM, Turner D. Item generation and reduction toward developing a patient‐reported outcome for pediatric ulcerative colitis (TUMMY‐UC). Journal of Pediatric Gastroenterology and Nutrition. 2017 Mar;64(3):373-7. Marcovitch L, Focht G, Carmon N, Tersigni C, Ledder O, Lev-Tzion R, Church PC, Hyams JS, Baldassano RN, Bousvaros A, Mack DR. Development and validation of the TUMMY-UC: A patient-reported outcome for pediatric ulcerative colitis. Gastroenterology. 2023 Apr 1;164(4):610-8. |
No information | Unknown | Dan Turner, turnerd@szmc.org.il | Nil | Yes | Colman RJ, Solitano V, MacDonald JK, Ma C, Griffiths AM, Jairath V, Crowley E. Operating Properties of Disease Activity Indices in Pediatric Inflammatory Bowel Disease: A Systematic Review. Inflammatory Bowel Diseases. 2024 Mar 28:izae060. | |
| Gastrointestinal | Ulcerative colitis | Ulcerative Colitis Patient-Reported Outcomes Signs and Symptoms | UC-PRO/SS | USA | 2018 | To provide standardised data on gastrointestinal signs and symptoms of ulcerative colitis. | 9 | 2 | Bowel signs and symptoms; Abdominal symptoms | Yes | Higgins PDR, Harding G, Revicki DA, Globe G, Patrick DL, Fitzgerald K, Viswanathan H, Donelson SM, Ortmeier BG, Chen WH, Leidy NK, DeBusk K. Development and validation of the Ulcerative Colitis patient-reported outcomes signs and symptoms (UC-pro/SS) diary. J Patient Rep Outcomes. 2017;2(1):26 | Yes | Unknown | https://www.evidera.com/ulcerative-colitis-patient-reported-outcomes-uc-pro/#licensing-information | Nil | Yes | Kim C, Brown FL, Burk C, Anatchkova M, Sargalo N, Kaushik A. Patient experiences in ulcerative colitis: conceptual model and review of patient-reported outcome measures. Quality of Life Research. 2024 May;33(5):1373-87. |
| Hearing and vision | Hearing deficits | Effectiveness of Auditory Rehabilitation Scale | EAR Scale | USA | 2005 | To measure hearing-related function and quality of life in patients with hearing aids. | 22 | 2 | Inner EAR module; Outer EAR module | Yes | Yueh B, McDowell JA, Collins M, Souza PE, Loovis CF, Deyo RA. Development and validation of the effectiveness of auditory rehabilitation scale. Archives of otolaryngology–head & neck surgery. 2005 Oct 1;131(10):851-6. Jessen A, Ho AD, Corrales CE, Yueh B, Shin JJ. Improving Measurement Efficiency of the Inner EAR Scale with Item Response Theory. Otolaryngol Head Neck Surg. 2018 Jun;158(6):1093-1100. doi: 10.1177/0194599818760528. Epub 2018 Mar 7. PMID: 29512425. |
No information | Unknown | Dr Yueh, Department of Health Services, University of Washington, Seattle. | Nil | Yes | Viergever K, Kraak JT, Bruinewoud EM, Ket JC, Kramer SE, Merkus P. Questionnaires in otology: a systematic mapping review. Systematic Reviews. 2021 Dec;10:1-9. |
| Hearing and vision | Hearing deficits | Hearing Handicap Inventory for the Elderly/Adults | HHIE/HHIA | USA | 1982 | To assess the effects of hearing impairment on emotional and social adjustment. | 25 | 2 | Emotional consequences; Social/situational effects due to hearing loss | Yes | Ventry IM, Weinstein BE. The hearing handicap inventory for the elderly: a new tool. Ear Hear. 1982 May-Jun;3(3):128-34. doi: 10.1097/00003446-198205000-00006. PMID: 7095321. Weinstein BE, Spitzer JB, Ventry IM. Test-retest reliability of the Hearing Handicap Inventory for the Elderly. Ear and hearing. 1986 Oct 1;7(5):295-9. Newman CW, Weinstein BE, Jacobson GP, Hug GA. The Hearing Handicap Inventory for Adults: psychometric adequacy and audiometric correlates. Ear and hearing. 1990 Dec 1;11(6):430-3. Cassarly C, Matthews LJ, Simpson AN, Dubno JR. The Revised Hearing Handicap Inventory and Screening Tool Based on Psychometric Reevaluation of the Hearing Handicap Inventories for the Elderly and Adults. Ear Hear. 2020 Jan/Feb;41(1):95-105. doi: 10.1097/AUD.0000000000000746. PMID: 31124792; PMCID: PMC6864238. |
No information | Unknown | Ira M. Ventry, Ph.D., Teachers College, 525 West 120th Street, New York, NY 10027. |
Nil | Yes | Viergever K, Kraak JT, Bruinewoud EM, Ket JC, Kramer SE, Merkus P. Questionnaires in otology: a systematic mapping review. Systematic Reviews. 2021 Dec;10:1-9. |
| Hearing and vision | Hearing deficits | modified Amsterdam Inventory For Auditory Disability And Handicap | (m)AIADH | The Netherlands | 1995 | To comprehensively assess aspects of hearing disability. | 28 | 5 | Distinction of sound; Auditory localisation; Speech intelligibility in noise; Speech intelligibility in quite; Detection of sounds | Yes | Kramer SE, Kapteyn TS, Festen JM, Tobi H. Factors in subjective hearing disability. Audiology. 1995 Jan 1;34(6):311-20. Kramer SE, Kapteyn TS, Festen JM, Tobi H. The relationships between self-reported hearing disability and measures of auditory disability. Audiology. 1996 Jan 1;35(5):277-87. Boeschen Hospers JM, Smits N, Smits C, Stam M, Terwee CB, Kramer SE. Reevaluation of the Amsterdam inventory for auditory disability and handicap using item response theory. Journal of Speech, Language, and Hearing Research. 2016 Apr;59(2):373-83. Kyung M, Chin DL, Phelps S, Hong O. Testing the reliability and validity of the modified Amsterdam Inventory for Auditory Disability and Handicap in career firefighters in the United States. American Journal of Industrial Medicine. 2023 Dec;66(12):1101-8. |
No information | Unknown | Sophia E. KramerClinical Audiology, Department of Otolaryngology, University Hospital VU, Amsterdam, The Netherlands | Nil | Yes | Viergever K, Kraak JT, Bruinewoud EM, Ket JC, Kramer SE, Merkus P. Questionnaires in otology: a systematic mapping review. Systematic Reviews. 2021 Dec;10:1-9. |
| Hearing and vision | Hearing deficits | Spatial Hearing Questionnaire | SHQ | USA | 2009 | To assess difficulties in binaural hearing experienced by patients with hearing loss. | 24 | 3 | Localisation; Speech in noise and music in quiet; Speech in quiet | Yes | Tyler RS, Perreau AE, Ji H. Validation of the spatial hearing questionnaire. Ear and hearing. 2009 Aug 1;30(4):466-75. Ou H, Perreau A, Tyler RS. Development of a shortened version of the Spatial Hearing Questionnaire (SHQ-S) for screening spatial-hearing ability. American journal of audiology. 2017 Sep 18;26(3):293-300. Perreau A, Ou H, Bramley A, Aldridge E, Tyler R. Validation of the Pediatric Spatial Hearing Questionnaire. American journal of audiology. 2024 Sep 3;33(3):895-904. |
No information | Unknown | Ann E Perreau, ann-perreau@uiowa.edu | Nil | Yes | Viergever K, Kraak JT, Bruinewoud EM, Ket JC, Kramer SE, Merkus P. Questionnaires in otology: a systematic mapping review. Systematic Reviews. 2021 Dec;10:1-9. |
| Hearing and vision | Hearing devices | Abbreviated Profile of Hearing Aid Benefit | APHAB | USA | 1995 | To measure unaided and aided performance and hearing aid benefit. | 24 | 4 | Ease of communication; Reverberation; Background noise; Aversiveness of sounds | Yes | Cox RM, Alexander GC. The abbreviated profile of hearing aid benefit. Ear Hear. 1995 Apr;16(2):176-86 | No information | Unknown | Cox RM, Alexander GC. The abbreviated profile of hearing aid benefit. Ear Hear. 1995 Apr;16(2):176-86 | Nil | Yes | Viergever K, Kraak JT, Bruinewoud EM, Ket JC, Kramer SE, Merkus P. Questionnaires in otology: a systematic mapping review. Systematic Reviews. 2021 Dec;10:1-9. Oosthuizen I, Kumar LM, Nisha KV, Swanepoel DW, Granberg S, Karlsson E, Manchaiah V. Patient-Reported Outcome Measures for Hearing Aid Benefit and Satisfaction: Content Validity and Readability. Journal of Speech, Language, and Hearing Research. 2023 Oct 4;66(10):4117-36. |
| Hearing and vision | Hearing devices | Cochlear Implant Quality of Life-35 Profile | CIQOL-35 | USA | 2019 | To measure quality of life outcomes after cochlear implantation. | 35 | 6 | Communication; Emotional; Entertainment; Environment; Listening effort; Social | Yes | McRackan TR, Hand BN, Cochlear Implant Quality of Life Development Consortium, Velozo CA, Dubno JR. Cochlear Implant Quality of Life (CIQOL): development of a profile instrument (CIQOL-35 Profile) and a global measure (CIQOL-10 Global). Journal of Speech, Language, and Hearing Research. 2019 Sep 20;62(9):3554-63. McRackan TR, Hand BN, Chidarala S, Velozo CA, Dubno JR; Cochlear Implant Quality of Life Consortium. Normative Cochlear Implant Quality of Life (CIQOL)-35 Profile and CIQOL-10 Global Scores for Experienced Cochlear Implant Users from a Multi-Institutional Study. Otol Neurotol. 2022 Aug 1;43(7):797-802. |
Yes | Unknown | MUSC Foundation for Research Development | Nil | Yes | Viergever K, Kraak JT, Bruinewoud EM, Ket JC, Kramer SE, Merkus P. Questionnaires in otology: a systematic mapping review. Systematic Reviews. 2021 Dec;10:1-9. |
| Hearing and vision | Hearing devices | Glasgow Hearing Aid Benefit Profile | GHABP | UK | 1999 | To assess the efficacy and effectiveness of rehabilitation services for hearing-impaired adults. | 48 | 6 | Preintervention disability; Handicap; Reported hearing aid use; Reported benefit; Satisfaction; Residual disability | Yes | Gatehouse S. Glasgow Hearing Aid Benefit Profile: Derivation and validation of a client-centered outcome measure for hearing aid services. Journal of the American academy of audiology. 1999 Feb;10(02):80-103. | No copYesright or publiclYes available | Unknown | Stuart Gatehouse, MRC Institute of Hearing Research (Scottish Section), Glasgow, Scotland | Nil | None identified in March 2025 | None identified in March 2025 |
| Hearing and vision | Hearing devices | International Outcome Inventory for Hearing Aids | IOI-HA | USA | 2002 | To evaluate the effectiveness of hearing aid treatments. | 7 | 2 | Me and my hearing aids; Me and the rest of the world | Yes | Cox RM, Alexander GC. The International Outcome Inventory for Hearing Aids (IOI-HA): psychometric properties of the English version: El Inventario International de Resultados para Auxiliares Auditivos (IOI-HA): propiedades psicometricas de la version en ingles. International journal of audiology. 2002 Jan 1;41(1):30-5. | No information | Unknown | Robyn Cox, The Department of Veterans Affairs Medical Center, Memphis, TN, and the University of Memphis, Memphis, TN, USA; robyncox@latte.memphis.edu | https://www.tandfonline.com/doi/pdf/10.3109/14992020209101309?casa_token=vp1Y6sCvWk4AAAAA:LC-fCO5y2hMqxEBocoFZeFWpJnXSBWdUUQ7tdyt4YGEXO_X5VH770UbJzfRTT3hpFraOyG8DL96e | Yes | Oosthuizen I, Kumar LM, Nisha KV, Swanepoel DW, Granberg S, Karlsson E, Manchaiah V. Patient-Reported Outcome Measures for Hearing Aid Benefit and Satisfaction: Content Validity and Readability. Journal of Speech, Language, and Hearing Research. 2023 Oct 4;66(10):4117-36. |
| Hearing and vision | Hearing devices | Listening Effort Questionnaire-Cochlear Implant | LEQ-CI | UK | 2021 | To assess perceived listening effort in everyday life in adults with severe-profound hearing loss who are candidates/in the rehabilitation process for a Cochlear Implant. | 21 | No specific domains/dimensions identified | Yes | Hughes SE, Watkins A, Rapport F, Boisvert I, McMahon CM, Hutchings HA. Rasch Analysis of the Listening Effort Questionnaire-Cochlear Implant. Ear Hear. 2021 Nov-Dec 01;42(6):1699-1711. | Yes | Unknown | PROMS@swan-sea.ac.uk | Nil | |||
| Hearing and vision | Refractive error, Refractive surgery | Refractive Status And Vision Profile | RSVP | USA | 2000 | To measure outcomes of refractive surgery and other treatments related to refractive error. | 42 | 8 | Concerns; Driving; Expectations; Physical/social functioning; Symptoms; Optical problems; Glare; Problems with corrective lenses | Yes | Schein OD. The measurement of patient-reported outcomes of refractive surgery: the refractive status and vision profile. Transactions of the American Ophthalmological Society. 2000;98:439. Schein OD, Vitale S, Cassard SD, Steinberg EP. Patient outcomes of refractive surgery: the refractive status and vision profile. Journal of Cataract & Refractive Surgery. 2001 May 1;27(5):665-73. |
Yes | Unknown | Copyright held by John Hopkins University. | Nil | Yes | Sharma G, Chiva-Razavi S, Viriato D, Naujoks C, Patalano F, Bentley S, Findley A, Johnson C, Arbuckle R, Wolffsohn J. Patient-reported outcome measures in presbyopia: a literature review. BMJ open ophthalmology. 2020 Jul 1;5(1):e000453 Kandel H, Khadka J, Goggin M, Pesudovs K. Patient-reported outcomes for assessment of quality of life in refractive error: a systematic review. Optometry and Vision Science. 2017 Dec 1;94(12):1102-19. Kandel H, Khadka J, Lundström M, Goggin M, Pesudovs K. Questionnaires for measuring refractive surgery outcomes. Journal of Refractive Surgery. 2017 Jun 1;33(6):416-24. |
| Hearing and vision | Refractive errors | National Eye Institute Refractive Error Quality Of Life Instrument | NEI-RQL-42 | USA | 2003 | To assess the impact of refractive error and its correction on day-to-day life. | 42 | 13 | Clarity of vision; Expectations; Near vision; Far vision; Diurnal fluctuations; Activity limitations; Glare; Symptoms; Dependence on correction; Worry; Suboptimal correction; Appearance; Satisfaction with correction | Yes | Hays RD, Mangione CM, Ellwein L, Lindblad AS, Spritzer KL, McDonnell PJ, NEI-RQL Research Group. Psychometric properties of the National Eye Institute–refractive error quality of life instrument. Ophthalmology. 2003 Dec 1;110(12):2292-301. McDonnell PJ, Mangione C, Lee P, Lindblad AS, Spritzer KL, Berry S, Hays RD, NEI-RQL Research Group. Responsiveness of the National Eye Institute Refractive Error Quality of Life instrument to surgical correction of refractive error. Ophthalmology. 2003 Dec 1;110(12):2302-9. |
Yes | Unknown | https://www.nei.nih.gov/sites/default/files/nei-pdfs/nei-rql-42-1.pdf | Yes | Kandel H, Khadka J, Goggin M, Pesudovs K. Patient-reported outcomes for assessment of quality of life in refractive error: a systematic review. Optometry and Vision Science. 2017 Dec 1;94(12):1102-19. Sharma G, Chiva-Razavi S, Viriato D, Naujoks C, Patalano F, Bentley S, Findley A, Johnson C, Arbuckle R, Wolffsohn J. Patient-reported outcome measures in presbyopia: a literature review. BMJ open ophthalmology. 2020 Jul 1;5(1):e000453. |
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| Hearing and vision | Refractive errors | Near Activity Visual Questionnaire | NAVQ | UK | 2012 | To measure near visual function and satisfaction, as a complement to visual function evaluations of presbyopic conditions. | 10 | No specific domains/dimensions identified | Yes | Buckhurst PJ, Wolffsohn JS, Gupta N, Naroo SA, Davies LN, Shah S. Development of a questionnaire to assess the relative subjective benefits of presbyopia correction. J Cataract Refract Surg. 2012 Jan;38(1):74-9. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/near-activity-visual-questionnaire | Nil | Yes | Sharma G, Chiva-Razavi S, Viriato D, Naujoks C, Patalano F, Bentley S, Findley A, Johnson C, Arbuckle R, Wolffsohn J. Patient-reported outcome measures in presbyopia: a literature review. BMJ open ophthalmology. 2020 Jul 1;5(1):e000453. Khadka J, McAlinden C, Pesudovs K. Quality assessment of ophthalmic questionnaires: review and recommendations. Optometry and Vision Science. 2013 Aug 1;90(8):720-44. |
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| Hearing and vision | Refractive errors | Near Vision Presbyopia Task-based Questionnaire | NVPTQ | USA | 2021 | To evaluate vision-related reading ability and satisfaction with vision-related reading ability in patients with presbyopia. | 12 | 2 | Performance; Satisfaction | Yes | Shirneshan E, Coon CD, Johnson N, Stokes J, Wells T, Lundy JJ, Andrae DA, Evans CJ, Campbell J. Development of the Near Vision Presbyopia Task-based Questionnaire for use in evaluating the impact of presbyopia. J Patient Rep Outcomes. 2021 Dec 2;5(1):125. | No information | Unknown | Elaheh Shirneshan, Elaheh.Shirneshan@abbvie.com | Nil | None identified in March 2025 | None identified in March 2025 |
| Hearing and vision | Refractive errors, surgery | Patient-Reported Outcomes with LASIK Symptoms and Satisfaction | PROWL-SS | USA | 2017 | To measure satisfaction, eye-related symptoms and their effects on functioning and wellbeing following LASIK (Laser In Situ Keratomileusis), administered pre- and/or post-operatively. | 161 | 16 | NEI-RQL-41 (Clarity of vision; Near vision; Far vision; Glare; Diurnal vision; Activity limitations; Worry); NEI-VFQ-25 Driving; Hours worked; OSDI (Symptoms; Environment); Visual symptoms (Glare; Starbursts: Halos; Double images); Satisfaction with vision | Yes | Hays RD, Tarver ME, Spritzer KL, Reise S, Hilmantel G, Hofmeister EM, Hammel K, May J, Ferris F 3rd, Eydelman M. Assessment of the Psychometric Properties of a Questionnaire Assessing Patient-Reported Outcomes With Laser In Situ Keratomileusis (PROWL). JAMA Ophthalmol. 2017 Jan 1;135(1):3-12 | No information | Unknown | https://www.fda.gov/medical-devices/lasik/lasik-quality-life-collaboration-project#tool | Nil | Yes | Le DT, Kandel H, Watson SL. Evaluation of ocular neuropathic pain. The Ocular Surface. 2023 Sep 23. |
| Hearing and vision | Vision disorders, cataract | Activities Of Daily Vision Scale | ADVS | USA | 1992 | To assess patient's visual functional status and ability to perform daily activities related to vision. | 20 | 5 | Distance vision; Near vision; Glare disability; Night driving; Daytime driving | Yes | Mangione CM, Phillips RS, Seddon JM, Lawrence MG, Cook EF, Dailey R, Goldman L. Development of the Activities of Daily Vision Scale: a measure of visual functional status. Medical care. 1992 Dec 1;30(12):1111-26. | No information | Unknown | Carol Mangione, Division of Clinical Epidemiology, Harvard School of Public Health, Boston, Massachusetts | Nil | Yes | Bédard E, Kergoat H, Kergoat MJ, Leclerc BS. Systematic review of vision‐related quality of life questionnaires for older institutionalised seniors with dementia. Ophthalmic and Physiological Optics. 2015 Jul;35(4):377-87. |
| Hearing and vision | Vision disorders, cataract | Cat-PROM5 | Cat-PROM5 | UK | 2018 | To provide a brief assessment of vision in the context of cataract surgery. | 5 | No specific domains/dimensions identified | Yes | Sparrow JM, Grzeda MT, Frost NA, Johnston RL, Liu CS, Edwards L, Loose A, Donovan JL. Cat-PROM5: a brief psychometrically robust self-report questionnaire instrument for cataract surgery. Eye. 2018 Apr;32(4):796-805. | Yes | Unknown | John Sparrow, John.Sparrow@doctors.org.uk | https://www.nature.com/articles/eye20181.pdf | None identified in March 2025 | None identified in March 2025 | |
| Hearing and vision | Vision disorders, cataract | Catquest-9SF questionnaire | Catquest-9SF | Sweden | 1997 | To measure patient-outcomes related to cataract surgery. | 9 | No specific domains/dimensions identified | Yes | Lundström M, Roos P, Jensen S, Fregell G. Catquest questionnaire for use in cataract surgery care: description, validity, and reliability. Journal of Cataract & Refractive Surgery. 1997 Oct 1;23(8):1226-36. Lundström M, Pesudovs K. Catquest-9SF patient outcomes questionnaire: nine-item short-form Rasch-scaled revision of the Catquest questionnaire. J Cataract Refract Surg. 2009 Mar;35(3):504-13. doi: 10.1016/j.jcrs.2008.11.038. PMID: 19251145. Gothwal VK, Wright TA, Lamoureux EL, Lundström M, Pesudovs K. Catquest questionnaire: re‐validation in an Australian cataract population. Clinical & experimental ophthalmology. 2009 Nov;37(8):785-94. Sparrow JM, Grzeda MT, Frost NA, Johnston RL, Liu CS, Edwards L, Loose A, Elliott D, Donovan JL. Cataract surgery patient-reported outcome measures: a head-to-head comparison of the psychometric performance and patient acceptability of the Cat-PROM5 and Catquest-9SF self-report questionnaires. Eye. 2018 Apr;32(4):788-95. |
PubliclYes available | Unknown | https://www.escrs.org/media/blgeqo04/catquest-english.pdf | Yes | Kabanovski A, Hatch W, Chaudhary V, El-Defrawy S, Reid R, Ahmed II, Schlenker MB. Validation and application of Catquest-9SF in various populations: A systematic review. Survey of ophthalmology. 2020 May 1;65(3):348-60. Sharma G, Chiva-Razavi S, Viriato D, Naujoks C, Patalano F, Bentley S, Findley A, Johnson C, Arbuckle R, Wolffsohn J. Patient-reported outcome measures in presbyopia: a literature review. BMJ open ophthalmology. 2020 Jul 1;5(1):e000453. |
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| Hearing and vision | Vision disorders, cataract | Visual Disability Assessment | VDA | Australia | 1998 | To measure the outcome of cataract surgery with respect to visual disability. | 18 | 4 | Mobility related disability; Distance/lighting/reading related disability; Near and related tasks visual disability; Overall index of visual disability | Yes | Pesudovs K, Coster DJ. An instrument for assessment of subjective visual disability in cataract patients. British Journal of Ophthalmology. 1998 Jun 1;82(6):617-24. Pesudovs K, Wright TA, Gothwal VK. Visual disability assessment: valid measurement of activity limitation and mobility in cataract patients. British Journal of Ophthalmology. 2010 Jun 1;94(6):777-81. |
No information | Unknown | Konrad Pesudovs, Department of Ophthalmology, Flinders Medical Centre, Bedford Park, South Australia, 5042, Australia | Nil | Yes | Margolis MK, Coyne K, Kennedy-Martin T, Baker T, Schein O, Revicki DA. Vision-specific instruments for the assessment of health-related quality of life and visual functioning: a literature review. Pharmacoeconomics. 2002 Oct;20:791-812. |
| Hearing and vision | Vision disorders, cataract | Visual Function Index | VF-14 | USA | 1994 | To measure functional impairment caused by cataracts. | 14 | No specific domains/dimensions identified | Yes | Steinberg EP, Tielsch JM, Schein OD, Javitt JC, Sharkey P, Cassard SD, Legro MW, Diener-West M, Bass EB, Damiano AM, Steinwachs DM. The VF-14: an index of functional impairment in patients with cataract. Archives of Ophthalmology. 1994 May 1;112(5):630-8. Cassard SD, Patrick DL, Damiano AM, Legro MW, Tielsch JM, Diener-West M, Schein OD, Javitt JC, Bass EB, Steinberg EP. Reproducibility and responsiveness of the VF-14: an index of functional impairment in patients with cataracts. Archives of Ophthalmology. 1995 Dec 1;113(12):1508-13. |
No information | Unknown | E.P. Steinberg, Department of Medicine, Johns Hopkins University School of Medicine | Nil | Yes | Chen BS, Galus T, Archer S, Tadić V, Horton M, Pesudovs K, Braithwaite T, Yu-Wai-Man P. Capturing the experiences of patients with inherited optic neuropathies: a systematic review of patient-reported outcome measures (PROMs) and qualitative studies. Graefe's Archive for Clinical and Experimental Ophthalmology. 2022 Jun;260(6):2045-55. Chen BS, Galus T, Archer S, Tadić V, Horton M, Pesudovs K, Braithwaite T, Yu-Wai-Man P. Capturing the experiences of patients with inherited optic neuropathies: a systematic review of patient-reported outcome measures (PROMs) and qualitative studies. Graefe's Archive for Clinical and Experimental Ophthalmology. 2022 Jun;260(6):2045-55. |
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| Hearing and vision | vision disorders, general | Functional Vision Questionnaire for Children and Young People | FVQ-CYP | UK | 2013 | To assess functional vision in visually impaired children and young people. | 36 | No specific domains/dimensions identified | Yes | Tadic V, Cooper A, Cumberland P, Lewando-Hundt G, Rahi JS; Vision-related quality of life Group. Development of the functional vision questionnaire for children and young people with visual impairment: the FVQ_CYP. Ophthalmology. 2013;120(12):2725–32 Robertson AO, Tadić V, Cortina-Borja M, Rahi JS. A patient-reported outcome measure of functional vision for children and young people aged 8 to 18 years with visual impairment. American Journal of Ophthalmology. 2020 Nov 1;219:141-53 |
Yes | Unknown | UCL Great Ormond Street Insittute of Child Health | Nil | Yes | Janic A, Bowden S, Levy S, Stinson J, Dimaras H. Patient-reported outcome measures for retinoblastoma: a scoping review. Journal of patient-reported outcomes. 2020 Dec;4:1-6. | |
| Hearing and vision | Vision disorders, general | Impact Of Vision Impairment | IVI | Australia | 2000 | To assess vision-related quality of life by assessing participation in daily activities over the past month among people with low vision. | 28 | 3 | Emotional wellbeing; Reading and accessing information; Mobility and independence | Yes | Hassell JB, Weih LM. A measure of handicap for low vision rehabilitation: the impact of vision impairment profile. Clinical and experimental ophthalmology. 2000. 28:156-61. Lamoureux EL, Pallant JF, Pesudovs K, Hassell JB, Keeffe JE. The Impact of Vision Impairment Questionnaire: an evaluation of its measurement properties using Rasch analysis. Investigative ophthalmology & visual science. 2006 Nov 1;47(11):4732-41. Lamoureux EL, Pallant JF, Pesudovs K, Rees G, Hassell JB, Keeffe JE. The impact of vision impairment questionnaire: an assessment of its domain structure using confirmatory factor analysis and Rasch analysis. Investigative ophthalmology & visual science. 2007 Mar 1;48(3):1001-6. Cochrane GM, Marella M, Keeffe JE, Lamoureux EL. The Impact of Vision Impairment for Children (IVI_C): validation of a vision-specific pediatric quality-of-life questionnaire using Rasch analysis. Investigative ophthalmology & visual science. 2011 Mar 1;52(3):1632-40. Fenwick EK, Man RE, Rees G, Keeffe J, Wong TY, Lamoureux EL. Reducing respondent burden: validation of the Brief Impact of Vision Impairment questionnaire. Quality of Life Research. 2017 Feb;26:479-88. Man RE, Gan AT, Constantinou M, Fenwick EK, Holloway E, Finkelstein EA, Coote M, Jackson J, Rees G, Lamoureux EL. Effectiveness of an innovative and comprehensive eye care model for individuals in residential care facilities: results of the residential ocular care (ROC) multicentred randomised controlled trial. British Journal of Ophthalmology. 2020 Nov 1;104(11):1585-90. |
Yes | Unknown | https://www.cera.org.au/pro-questionnaires/; ecosse@prominsight.com | Nil | Yes | Vujosevic S, Chew E, Labriola L, Sivaprasad S, Lamoureux E. Measuring quality of life in diabetic retinal disease: a narrative review of available patient-reported outcome measures. Ophthalmology Science. 2024 Mar 1;4(2):100378. Vélez CM, Ramírez PB, Oviedo-Cáceres MD, Lugo Agudelo LH, Posada AM, Hernández-Padilla ML, Valverde EA, Suárez-Escudero JC. Psychometric properties of scales for assessing the vision-related quality of life of people with low vision: a systematic review. Ophthalmic Epidemiology. 2023 May 4;30(3):239-48. Selvan K, Abalem MF, Lacy GD, Vincent A, Héon E. The state of patient-reported outcome measures for pediatric patients with inherited retinal disease. Ophthalmology and Therapy. 2022 Jun;11(3):1031-46. |
| Hearing and vision | Vision disorders, general | National Eye Institute Visual Function Questionnaire | NEI-VFQ | USA | 1998 | To assess the patient perspective on visual disabilities and their impact on daily functioning. | 51 | 12 | General health; General vision; Visual pain; Near activities; Distance activities; Vision-specific social functioning; Mental health; Expectations; Role difficulties; Dependence; Driving; Colour vision; Peripheral | Yes | Mangione CM, Lee PP, Pitts J, Gutierrez P, Berry S, Hays RD, NEI-VFQ Field Test Investigators. Psychometric properties of the National Eye Institute visual function questionnaire (NEI-VFQ). Archives of ophthalmology. 1998 Nov 1;116(11):1496-5040 | Yes | Unknown | Appendix 1 Parrish RK 2nd. Visual impairment, visual functioning, and quality of life assessments in patients with glaucoma. Trans Am Ophthalmol Soc. 1996;94:919-1028 | Nil | Yes | Sharma G, Chiva-Razavi S, Viriato D, Naujoks C, Patalano F, Bentley S, Findley A, Johnson C, Arbuckle R, Wolffsohn J. Patient-reported outcome measures in presbyopia: a literature review. BMJ open ophthalmology. 2020 Jul 1;5(1):e000453. |
| Hearing and vision | Vision disorders, general | National Eye Institute Visual Function Questionnaire | NEI-VFQ-25 | USA | 2001 | To capture the influence of vision on multiple dimensions of health-related quality of life, including emotional wellbeing and social functioning. | 25 | 12 | General health; General vision; Near vision; Distance vision; Driving; Peripheral vision; Colour vision; Ocular pain; Role limitations; Dependency; Social function; Mental Health | Yes | Mangione CM, Lee PP, Gutierrez PR, Spritzer K, Berry S, Hays RD. Development of the 25-item National Eye institute visual Function Questionnaire. Archives of ophthalmology (1960). 2001;119(7):1050–8. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/national-eye-institute-visual-function-questionnaire-25 | https://www.nei.nih.gov/learn-about-eye-health/outreach-resources/outre… | Yes | Kandel H, Khadka J, Goggin M, Pesudovs K. Patient-reported outcomes for assessment of quality of life in refractive error: a systematic review. Optometry and Vision Science. 2017 Dec 1;94(12):1102-19. Sharma G, Chiva-Razavi S, Viriato D, Naujoks C, Patalano F, Bentley S, Findley A, Johnson C, Arbuckle R, Wolffsohn J. Patient-reported outcome measures in presbyopia: a literature review. BMJ open ophthalmology. 2020 Jul 1;5(1):e000453. |
| Hearing and vision | Vision disorders, general | Quality of Vision questionnaire | QoV | UK | 2010 | To measure subjective quality of vision in patients with all types of refractive correction, eye surgery, and eye disease. | 30 | 3 | Frequency; Severity; Bothersome | Yes | McAlinden C, Pesudovs K, Moore JE. The development of an instrument to measure quality of vision: the Quality of Vision (QoV) questionnaire. Invest Ophthalmol Vis Sci. 2010 Nov;51(11):5537-45 | No information | Unknown | Colm McAlinden, colm.mcalinden@gmail.com. | Nil | Yes | Sharma G, Chiva-Razavi S, Viriato D, Naujoks C, Patalano F, Bentley S, Findley A, Johnson C, Arbuckle R, Wolffsohn J. Patient-reported outcome measures in presbyopia: a literature review. BMJ open ophthalmology. 2020 Jul 1;5(1):e000453. Kandel H, Khadka J, Goggin M, Pesudovs K. Patient-reported outcomes for assessment of quality of life in refractive error: a systematic review. Optometry and Vision Science. 2017 Dec 1;94(12):1102-19. |
| Hearing and vision | Vision disorders, general | Veterans Affairs Low-Vision Visual Functioning Questionnaire | VA LV VFQ-48 | USA | 2004 | To assess the difficulty visually impaired persons have performing daily activities and evaluate the outcomes of low-vision. | >48 | 4 | Difficulty in performing 48 activities; For responses that an activity is difficult, is it because of vision; For activities where difficulty is due to vision loss, does the person want training; For patients able to perform activities, how do they usually accomplish this activity | Yes | Stelmack JA, Szlyk JP, Stelmack TR, Demers-Turco P, Williams RT, Moran D, Massof RW. Psychometric properties of the Veterans Affairs Low-Vision Visual Functioning Questionnaire. Invest Ophthalmol Vis Sci. 2004 Nov;45(11):3919-28 | No information | Unknown | Joan Stelmack, joan.stelmack@med.va.gov | Nil | Yes | Hepworth LR, Rowe FJ, Harper R, Jarvis K, Shipman T, Rodgers H. Patient reported outcome measures for visual impairment after stroke: a systematic review. Health and quality of life outcomes. 2015 Dec;13:1-0. |
| Hearing and vision | Vision disorders, general | Vision Quality Of Life Index | VisQoL | Australia | 2005 | The VisQoL is a Multi-Attribute Utility Instrument (MAUI) used to generate utility data in order to evaluate VRQoL (Vision-Related Quality of Life) associated with visual impairment. | 6 | No specific domains/dimensions identified | Yes | Misajon R, Hawthorne G, Richardson J, Barton J, Peacock S, Iezzi A, Keeffe J. Vision and quality of life: the development of a utility measure. Investigative ophthalmology & visual science. 2005 Nov 1;46(11):4007-15. Peacock S, Misajon R, Iezzi A, Richardson J, Hawthorne G, Keeffe J. Vision and quality of life: development of methods for the VisQoL vision-related utility instrument. Ophthalmic epidemiology. 2008 Jan 1;15(4):218-23. |
No information | Unknown | RoseAnne Misajon, Department of Ophthalmology, and the Vision Cooperative Research Center, University of Melbourne, East Melbourne, Australia | Nil | Yes | Kandel H, Pesudovs K, Watson SL. Measurement of quality of life in keratoconus. Cornea. 2020 Mar 1;39(3):386-93. Hepworth LR, Rowe FJ, Harper R, Jarvis K, Shipman T, Rodgers H. Patient reported outcome measures for visual impairment after stroke: a systematic review. Health and quality of life outcomes. 2015 Dec;13:1-0. |
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| Hearing and vision | Vision disorders, general | Vision-related Quality of Life Core Measure/Vision Core Measure 1 | VCM1 | UK | 1998 | To assess concerns regarding vision and vision-related quality of life. | 10 | No specific domains/dimensions identified | Yes | Frost NA, Sparrow JM, Durant JS, Donovan JL, Peters TJ, Brookes ST. Development of a questionnaire for measurement of vision-related quality of life. Ophthalmic epidemiology. 1998 Jan 1;5(4):185-210. Frost A, Eachus J, Sparrow J, Peters TJ, Hopper C, Davey-Smith G, Frankel S. Vision-related quality of life impairment in an elderly UK population: associations with age, sex, social class and material deprivation. Eye. 2001 Nov;15(6):739-44. Lamoureux EL, Pesudovs K, Pallant JF, Rees G, Hassell JB, Caudle LE, Keeffe JE. An evaluation of the 10-item vision core measure 1 (VCM1) scale (the Core Module of the Vision-Related Quality of Life scale) using Rasch analysis. Ophthalmic Epidemiology. 2008 Jan 1;15(4):224-33. |
No information | Unknown | Mr N.A. Frost; Clinical Research Fellow; Bristol Eye Hospital, Lower Maudlin Street, Bristol BS1 2LX, U.K.; Tel.: +44-117 928 4445/4697; Fax: +44-117 925 1421; Email: Andy.Frost@bristol.ac.uk | Nil | Yes | Recchioni A, Aiyegbusi OL, Cruz-Rivera S, Rauz S, Slade A. A systematic review assessing the quality of patient reported outcomes measures in dry eye diseases. PLoS One. 2021 Aug 9;16(8):e0253857. De Boer MR, Moll AC, De Vet HC, Terwee CB, Völker‐Dieben HJ, Van Rens GH. Psychometric properties of vision‐related quality of life questionnaires: a systematic review. Ophthalmic and Physiological Optics. 2004 Jul;24(4):257-73. |
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| Hearing and vision | Vision disorders, general | Visual Activities Questionnaire | VAQ | USA | 1992 | To assess visual performance problems encountered in everyday life. | 33 | 8 | Colour Discrimination; Glare Disability; Light/Dark Adaptation; Acuity/Spatial Vision; Depth Perception; Peripheral Vision; Visual Search; Visual Processing Speed | Yes | Sloane ME, Ball K, Owsley C, Bruni JR, Roenker DL. The Visual Activities Questionnaire: developing an instrument for assessing problems in everyday visual tasks. InNoninvasive Assessment of the Visual System 1992 Jan 25 (p. SuB4). Optica Publishing Group. | No information | Unknown | Michael E. Sloane, Dept. of Psychology, Univ. of Alabama at Birmingham, Birmingham, AL 35294 | Nil | Yes | Margolis MK, Coyne K, Kennedy-Martin T, Baker T, Schein O, Revicki DA. Vision-specific instruments for the assessment of health-related quality of life and visual functioning: a literature review. Pharmacoeconomics. 2002 Oct;20:791-812. Hepworth LR, Rowe FJ, Harper R, Jarvis K, Shipman T, Rodgers H. Patient reported outcome measures for visual impairment after stroke: a systematic review. Health and quality of life outcomes. 2015 Dec;13:1-0. |
| Hearing and vision | Vision disorders; Quality of life | Low Vision Quality-Of-Life Questionnaire | LVQOL | Australia | 2000 | To assess vision-specific quality of life among patients with low-vision in the context of rehabilitation strategy and management. | 25 | 4 | Distance vision, mobility and lighting; Adjustment; Reading and fine work; Activities of daily living | Yes | Wolffsohn JS, Cochrane AL. Design of the low vision quality-of-life questionnaire (LVQOL) and measuring the outcome of low-vision rehabilitation. American journal of ophthalmology. 2000 Dec 1;130(6):793-802. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/low-vision-quality-of-life-… | https://www.sciencedirect.com/science/article/pii/S0002939400006103?cas… | Yes | Yoganathan A, Sandinha T, Shamdas M, Diafas A, Steel D. Patient-reported outcome measures in vitreoretinal surgery: a systematic review. Eye. 2023 Feb;37(3):391-401. Vélez CM, Ramírez PB, Oviedo-Cáceres MD, Lugo Agudelo LH, Posada AM, Hernández-Padilla ML, Valverde EA, Suárez-Escudero JC. Psychometric properties of scales for assessing the vision-related quality of life of people with low vision: a systematic review. Ophthalmic Epidemiology. 2023 May 4;30(3):239-48. |
| Infectious diseases | HIV | Functional Assessment Of HIV Infection | FAHI | USA | 1996 | To assess quality of life in patients with HIV over the preceding 7 days. | 47 | 5 | Physical wellbeing; Social/family wellbeing; Emotional wellbeing/living with HIV; Cognitive functioning; Functional and global wellbeing | Yes | Cella DF, McCain NL, Peterman AH, Mo F, Wolen D. Development and validation of the Functional Assessment of Human Immunodeficiency Virus Infection (FAHI) quality of life instrument. Quality of Life Research. 1996 Aug;5(4):450-63. Peterman AH, Cella D, Mo F, McCain N. Psychometric validation of the revised Functional Assessment of Human Immunodeficiency Virus Infection (FAHI) quality of life instrument. Quality of Life Research. 1997 Nov;6:572-84. Viala-Danten M, Dubois D, Gilet H, Martin S, Peeters K, Cella D. Psychometric evaluation of the functional assessment of HIV Infection (FAHI) questionnaire and its usefulness in clinical trials. Quality of Life Research. 2010 Oct;19:1215-27. |
Yes | Unknown | https://www.facit.org/measures/fahi | https://www.facit.org/_files/ugd/c0dc3a_fbdfc4dccd0c4cdf9553201b68438036.pdf | Yes | Gakhar H, Kamali A, Holodniy M. Health-related quality of life assessment after antiretroviral therapy: a review of the literature. Drugs. 2013 May;73:651-72. Wen H, Yang Z, Zhu Z, Han S, Zhang L, Hu Y. Psychometric properties of self-reported measures of health-related quality of life in people living with HIV: a systematic review. Health and Quality of Life Outcomes. 2022 Dec;20:1-43. |
| Infectious diseases | HIV | HIV Disability Questionnaire | HDQ | Canada | 2014 | To identify the presence, severity, and episodic nature of disability experienced by adults living with HIV. | 69 | 6 | Physical symptoms and impairments; Cognitive symptoms and impairments; Mental and emotional health symptoms and impairments; Uncertainty; Difficulties with day-to-day activities; Challenges to social inclusion | Yes | O’Brien KK, Bayoumi AM, Bereket T, Swinton M, Alexander R, King K, Solomon P. Sensibility assessment of the HIV Disability Questionnaire. Disability and rehabilitation. 2013 Apr 1;35(7):566-77. O'Brien KK, Solomon P, Bayoumi AM. Measuring disability experienced by adults living with HIV: assessing construct validity of the HIV Disability Questionnaire using confirmatory factor analysis. BMJ open. 2014 Aug 1;4(8):e005456. O’Brien KK, Solomon P, Bergin C, O’Dea S, Stratford P, Iku N, Bayoumi AM. Reliability and validity of a new HIV-specific questionnaire with adults living with HIV in Canada and Ireland: the HIV Disability Questionnaire (HDQ). Health and quality of life outcomes. 2015 Dec;13:1-1. O’Brien KK, Bayoumi AM, Stratford P, Solomon P. Which dimensions of disability does the HIV Disability Questionnaire (HDQ) measure? A factor analysis. Disability and Rehabilitation. 2015 Jun 19;37(13):1193-201. O’Brien KK, Dzingina M, Harding R, Gao W, Namisango E, Avery L, Davis AM. Developing a short-form version of the HIV disability questionnaire (SF-HDQ) for use in clinical practice: a Rasch analysis. Health and Quality of Life Outcomes. 2021 Dec;19:1-21. |
Yes | Unknown | https://research.mcmaster.ca/industry-investors/technologies-available-for-licensing/quality-of-life-questionnaires-tools/hiv-disability-questionnaire-hdq/ | Nil | Yes | Wang Z, Zhu Y, Duan X, Kang H, Qu B. HIV-Specific Reported outcome measures: Systematic review of psychometric properties. JMIR Public Health and Surveillance. 2022 Dec 8;8(12):e39015. |
| Infectious diseases | HIV | HIV Overview Of Problems - Evaluation System | HOPES | USA | 1992 | To measure quality of life in people infected with HIV. | 106-163 | 5 | Physical; Psychosocial; Medical interaction; Sexual; Significant other/partners | Yes | Schag CA, Ganz PA, Kahn B, Petersen L. Assessing the needs and quality of life of patients with HIV infection: development of the HIV Overview of Problems-Evaluation System (HOPES). Quality of life Research. 1992 Dec;1:397-413. | No information | Unknown | P A Ganz, https://www.uclahealth.org/providers/patricia-ganz | Nil | Yes | Wen H, Yang Z, Zhu Z, Han S, Zhang L, Hu Y. Psychometric properties of self-reported measures of health-related quality of life in people living with HIV: a systematic review. Health and Quality of Life Outcomes. 2022 Dec;20:1-43. |
| Infectious diseases | HIV | HIV Symptom Index | HIV-SI or SDM | USA | 2001 | To assess HIV symptoms for clinical management, patient-oriented research and adverse drug reporting, particularly in patients exposed to multidrug anti-retroviral therapies and protease inhibitors. It is not intended as a measure of quality of life so much as a providing insight into reasons behind a decline in quality of life. | 20 | No specific domains/dimensions identified | Yes | Justice AC, Holmes W, Gifford AL, Rabeneck L, Zackin R, Sinclair G, Weissman S, Neidig J, Marcus C, Chesney M, Cohn SE. Development and validation of a self-completed HIV symptom index. Journal of clinical epidemiology. 2001 Dec 1;54(12):S77-90. | No copYesright or publiclYes available | Unknown | Amy.Justice@med.va.gov | Nil | Yes | Wang Z, Zhu Y, Duan X, Kang H, Qu B. HIV-Specific Reported outcome measures: Systematic review of psychometric properties. JMIR Public Health and Surveillance. 2022 Dec 8;8(12):e39015. Gakhar H, Kamali A, Holodniy M. Health-related quality of life assessment after antiretroviral therapy: a review of the literature. Drugs. 2013 May;73:651-72. |
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| Infectious diseases | HIV | HIV Treatment Satisfaction Questionnaire | HIV-TSQ | Canada; USA | 2001 | To measure satisfaction with medication among people infected with HIV. | 10 | 2 | General satisfaction/clinical; Lifestyle/ease | Yes | Woodcock A, Bradley C. Validation of the HIV treatment satisfaction questionnaire (HIVTSQ). Qual Life Res. 2001;10(6):517-31 Woodcock A, Bradley C. Validation of the revised 10-item HIV Treatment Satisfaction Questionnaire status version and new change version. Value in Health. 2006 Sep 1;9(5):320-33. |
Yes | Unknown | Claire Bradley, C.Bradley@rhul.ac.uk | Nil | Yes | Wang Z, Zhu Y, Duan X, Kang H, Qu B. HIV-Specific Reported outcome measures: Systematic review of psychometric properties. JMIR Public Health and Surveillance. 2022 Dec 8;8(12):e39015. |
| Infectious diseases | HIV | HIV/AIDS-Targeted Quality Of Life | HAT-QoL | USA | 1998 | To measure quality of life concerns in people living with HIV or AIDS. | 42 | 9 | Overall function; Sexual function; Disclosure worries; Health worries; Financial worries; HIV mastery; Life satisfaction; Medication concerns; Provider trust | Yes | Holmes WC, Shea JA. A new HIV/AIDS-targeted quality of life (HAT-QoL) instrument: development, reliability, and validity. Medical care. 1998 Feb 1;36(2):138-54. | Yes | Unknown | William C Holmes, holmeswc@mail.med.upenn.edu. | https://journals.lww.com/lww-medicalcare/fulltext/1998/02000/SF_20_Scor… | Yes | Wang Z, Zhu Y, Duan X, Kang H, Qu B. HIV-Specific Reported outcome measures: Systematic review of psychometric properties. JMIR Public Health and Surveillance. 2022 Dec 8;8(12):e39015. Wen H, Yang Z, Zhu Z, Han S, Zhang L, Hu Y. Psychometric properties of self-reported measures of health-related quality of life in people living with HIV: a systematic review. Health and Quality of Life Outcomes. 2022 Dec;20:1-43. Gakhar H, Kamali A, Holodniy M. Health-related quality of life assessment after antiretroviral therapy: a review of the literature. Drugs. 2013 May;73:651-72. |
| Infectious diseases | HIV | Living With HIV Scale | LWH | USA | 1998 | To assess quality of life in patients with HIV. | 32 | 2 higher-order domains, 9 sub-domains | HIV struggles (Avoiding the fear zone; Loss; Body image; Juggling treatments and side-effects; Independence; Death calculations); HIV reverence (Cherishing the environment; Coveting time; Resolving Spiritual issues) | Yes | Holzemer WL, Spicer JG, Wilson HS, Kemppainen JK, Coleman C. Validation of the quality of life scale: living with HIV. Journal of advanced Nursing. 1998 Sep;28(3):622-30. | No information | Unknown | William L Holzemer, holzemer@rutgers.edu | Nil | Yes | Wang Z, Zhu Y, Duan X, Kang H, Qu B. HIV-Specific Reported outcome measures: Systematic review of psychometric properties. JMIR Public Health and Surveillance. 2022 Dec 8;8(12):e39015. |
| Infectious diseases | HIV | Medical Outcomes Study HIV Health Survey | MOS-HIV | USA | 1991 | To provide a brief, comprehensive measure of health status in people with HIV/AIDS. | 35 | 11 | General health perceptions; Physical function; Role function; Social function; Cognitive function; Pain; Mental health; Energy; Health distress; Quality of life; Health transition | Yes | Wu AW, Rubin HR, Mathews WC, Ware Jr JE, Brysk LT, Hardy WD, Bozzette SA, Spector SA, Richman DD. A health status questionnaire using 30 items from the Medical Outcomes Study: preliminary validation in persons with early HIV infection. Medical care. 1991 Aug 1;29(8):786-98. Wu AW, Revicki DA, Jacobson D, Malitz FE. Evidence for reliability, validity and usefulness of the Medical Outcomes Study HIV Health Survey (MOS-HIV). Quality of life research. 1997 Nov;6:481-93. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/medical-outcome-study-hiv-health-survey | Nil | Yes | Wang Z, Zhu Y, Duan X, Kang H, Qu B. HIV-Specific Reported outcome measures: Systematic review of psychometric properties. JMIR Public Health and Surveillance. 2022 Dec 8;8(12):e39015. Wen H, Yang Z, Zhu Z, Han S, Zhang L, Hu Y. Psychometric properties of self-reported measures of health-related quality of life in people living with HIV: a systematic review. Health and Quality of Life Outcomes. 2022 Dec;20:1-43. Cooper V, Clatworthy J, Harding R, Whetham J. Measuring quality of life among people living with HIV: a systematic review of reviews. Health and quality of life outcomes. 2017 Dec;15:1-20. Gakhar H, Kamali A, Holodniy M. Health-related quality of life assessment after antiretroviral therapy: a review of the literature. Drugs. 2013 May;73:651-72. |
| Infectious diseases | HIV | Multidimensional Quality Of Life Questionnaire For HIV/AIDS | MQOL-HIV | USA | 1997 | To provide a comprehensive assessment of quality of life in asymptomatic cases of HIV. | 40 | 10 | Mental health; Physical health; Physical functioning; Social functioning; Social support; Cognitive functioning; Financial status; Partner intimacy; Sexual functioning; Medical care | Yes | Smith KW, Swislow L, Avis NE, Mayer KH. Use of the MQoL-HIV with asymptomatic HIV-positive patients. Quality of life research. 1997 Nov;6:555-60. Avis NE. Development of the MQOL HIV: the Multidimensional Quality of Life Questionnaire for Persons with HIV/AIDS. Quality of Life Newsletter. 1997:3-4. |
Yes | Unknown | Kevin Smith, kevins@neri.org | Nil | Yes | Cooper V, Clatworthy J, Harding R, Whetham J. Measuring quality of life among people living with HIV: a systematic review of reviews. Health and quality of life outcomes. 2017 Dec;15:1-20. Wen H, Yang Z, Zhu Z, Han S, Zhang L, Hu Y. Psychometric properties of self-reported measures of health-related quality of life in people living with HIV: a systematic review. Health and Quality of Life Outcomes. 2022 Dec;20:1-43. |
| Infectious diseases | Influenza | Child Cold Symptom Questionnaire | CCSQ | USA | 2021 | To measure cold symptoms of children in the morning and in the evening. | 32 | 3 | Morning and evening nasal scores; Morning and evening aches and pains sores; Day nasal score | Yes | Arbuckle R, Halstead P, Marshall C, Zimmerman B, Bolton K, Regnault A, Gelotte C. Testing and psychometric validation of a pediatric instrument to self-assess symptoms of the common cold. The Patient-Patient-Centered Outcomes Research. 2021 Jan;14:101-17.. | Yes | Unknown | rob.arbuckle@adelphivalues.com | https://link.springer.com/article/10.1186/s41687-023-00546-2 | None identified in March 2025 | None identified in March 2025 |
| Infectious diseases | Influenza | Influenza Intensity And Impact Questionnaire | FluiiQ | USA | 2011 | To measure the symptoms and impact of influenza on individuals with influenza-like illness. | 24 | 5 | Systemic symptoms; Respiratory symptoms; Impact on usual activities; Impact on emotions; Impact on others | Yes | Osborne RH, Norquist JM, Elsworth GR, Busija L, Mehta V, Herring T, Gupta SB. Development and validation of the influenza intensity and impact questionnaire (FluiiQ™). Value in health. 2011 Jul 1;14(5):687-99. | Yes | Unknown | https://www.fluiiq.com/ | Nil | None identified in March 2025 | None identified in March 2025 |
| Infectious diseases | Influenza | Influenza Patient-Reported Outcome | Flu-PRO | Mexico; USA | 2016 | To assess the presence and severity of symptoms of influenza through daily diary form. | 32 | 6 | Nose; Throat; Eyes; Chest/respiratory; Gastrointestinal; Body/systemic | Yes | Powers JH, Guerrero ML, Leidy NK, Fairchok MP, Rosenberg A, Hernández A, Stringer S, Schofield C, Rodríguez-Zulueta P, Kim K, Danaher PJ. Development of the Flu-PRO: a patient-reported outcome (PRO) instrument to evaluate symptoms of influenza. BMC infectious diseases. 2016 Dec;16:1-1. Powers III JH, Bacci ED, Guerrero ML, Leidy NK, Stringer S, Kim K, Memoli MJ, Han A, Fairchok MP, Chen WJ, Arnold JC. Reliability, validity, and responsiveness of influenza patient-reported outcome (FLU-PRO©) scores in Influenza-Positive patients. Value in Health. 2018 Feb 1;21(2):210-8. |
Yes | Unknown | https://www.evidera.com/flu-pro/ | Nil | None identified in March 2025 | None identified in March 2025 |
| Infectious diseases | Influenza | Vaccinees' Perception of Injection | VAPI | France; Belgium; Germany; Italy; Spain; UK | 2009 | To assess patients' perception and acceptance of influenza vaccination and its subsequent injection site reactions. | 21 | 4 with 5 additional individual items | Bother from injection site reactions; Arm movement; Sleep; Acceptability; Individual items (anxiety before vaccination; bother from pain during vaccination; satisfaction with injection system; willingness to be vaccinated next year; anxiety about vaccination next year) | Yes | Chevat C, Viala-Danten M, Dias-Barbosa C, Nguyen VH. Development and psychometric validation of a self-administered questionnaire assessing the acceptance of influenza vaccination: the Vaccinees' Perception of Injection (VAPI) questionnaire. Health Qual Life Outcomes. 2009 Mar 4;7:21 | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/vaccinees-perception-of-injection | Nil | None identified in March 2025 | None identified in March 2025 |
| Injuries and Trauma | Brain injury | Brain Injury associated Visual Impairment Impact Questionnaire | BIVI-IQ | UK | 2019 | To assess the impact of post-stroke visual impairment on quality-of-life. | 13 | No specific domains/dimensions identified | Yes | Hepworth LR, Rowe FJ, Burnside G. Development of a patient reported outcome measures for measuring the impact of visual impairment following stroke. BMC health services research. 2019 Dec;19:1-7. Hepworth LR, Kirkham JJ, Perkins E, et al. Validation of the brain injury associated visual impairment - impact questionnaire (BIVI-IQ). Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation. 2024 Mar;33(3):777-791. DOI: 10.1007/s11136-023-03565-0. PMID: 38112864; PMCID: PMC10894123. |
Yes | Unknown | https://www.liverpool.ac.uk/population-health/research/groups/vision/bivi-iq/ | Nil | None identified in March 2025 | None identified in March 2025 | |
| Injuries and Trauma | Brain injury | Brain Injury Community Rehabilitation Outcome | BICRO-39 | UK | 1998 | To assess problems experienced by brain-injured patients living in the community. | 39 | 8 | Personal care; Psychological; Socializing; Self-organisation; Mobility; Productive employment; Family contact | Yes | Powell JH, Beckers K, Greenwood RJ. Measuring progress and outcome in community rehabilitation after brain injury with a new assessment instrument—the BICRO-39 scales. Archives of physical medicine and rehabilitation. 1998 Oct 1;79(10):1213-25. | No information | Unknown | http://www.bicro.co.uk/ | Nil | None identified in March 2025 | None identified in March 2025 |
| Injuries and Trauma | Brain injury | Community Integration Questionnaire | CIQ | USA | 1993 | To assess the social role limitations and community interaction of people with acquired brain injury. | 15 | 3 | Home integration; social integration; productive activity | Yes | Willer B, Rosenthal M, Kreutzer JS, Gordon WA, Rempel R. Assessment of community integration following rehabilitation for traumatic brain injury. The Journal of head trauma rehabilitation. 1993 Jun 1;8(2):75-87. | Yes | Unknown | bswiller@buffalo.edu | https://www.sralab.org/sites/default/files/2017-06/Community%20Integration%20Questionnaire%20Testing%20Form.pdf | Yes | Griffiths C, Guest E, White P, Gaskin E, Rumsey N, Pleat J, Harcourt D. A systematic review of patient-reported outcome measures used in adult burn research. Journal of Burn Care & Research. 2017 Mar 1;38(2):e521-45. |
| Injuries and Trauma | Brain injury | European Brain Injury Questionnaire | EBIQ | Belgium; Brazil; Denmark; Finland; France; Germany; Portugal; Spain | 1997 | To measure subjective experience of cognitive, emotional and social difficulties as a result of brain injury. | 63 | 9 | Somatic; Cognitive; Motivation; Impulsivity; Depression; Isolation; Physical; Communication | Yes | Teasdale TW, Christensen AL, Willmes K, Deloche G, Braga L, Stachowiak F, Vendrell JM, Castro-Caldas A, Laaksonen RK, Leclercq M. Subjective experience in brain injured patients and their close relatives: A European Brain Injury Questionnaire study. Brain Injury. 1997 Jan 1;11(8):543-64. Sopena S, Dewar BK, Nannery R, Teasdale TW, Wilson BA. The European Brain Injury Questionnaire (EBIQ) as a reliable outcome measure for use with people with brain injury. Brain Inj. 2007 Sep;21(10):1063-8. Bateman A, Teasdale TW, Willmes K. Assessing construct validity of the self-rating version of the European Brain Injury Questionnaire (EBIQ) using Rasch analysis. Neuropsychological rehabilitation. 2009 Dec 1;19(6):941-54. |
No information | Unknown | S Sopena, s.sopena@rhul.ac.uk | Nil | Yes | Polinder S, Haagsma JA, van Klaveren D, Steyerberg EW, Van Beeck EF. Health-related quality of life after TBI: a systematic review of study design, instruments, measurement properties, and outcome. Population health metrics. 2015 Dec;13:1-2. Brenner J, Olijslagers SH, Crijnen YS, de Vries JM, Mandarakas MR, Titulaer MJ. Clinical outcome assessments in encephalitis: a systematic review. Neurology: Neuroimmunology & Neuroinflammation. 2023 Dec 7;11(1):e200168. |
| Injuries and Trauma | Brain injury | Fear Avoidance Behaviour after Traumatic Brain Injury Questionnaire | FAB-TBI | Canada | 2020 | To assess fear avoidance behaviour after traumatic brain injury. | 16 | 3 | Activity avoidance; Cogniphobia; Symptom avoidance | Yes | Snell DL, Siegert RJ, Debert C, Cairncross M, Silverberg ND. Evaluation of the fear avoidance behavior after traumatic brain injury questionnaire. Journal of neurotrauma. 2020 Jul 1;37(13):1566-73. Cairncross M, Brooks BL, Virani S, Silverberg ND. Fear avoidance behavior in youth with poor recovery from concussion: measurement properties and correlates of a new scale. Child neuropsychology. 2021 Oct 3;27(7):911-21. |
No information | Unknown | Noah D Silverberg, noah.silverberg@vch.ca | Nil | Yes | Sherwood LJ, Korakakis V, Mosler AB, Fortington L, Murphy MC. When the Patient-Reported Outcome Measure Probably Does Not Measure What You Think You Are Measuring: Quantifying Fear Avoidance Behaviours in people with Concussion. A COSMIN-Informed Systematic Review. The Journal of Orthopaedic and Sports Physical Therapy. 2023 Aug 10:1-50. |
| Injuries and Trauma | Brain injury | Frontal Systems Behaviour Scale (formerly the Frontal Lobe Personality Scale; FLOPS) | FrSBe | USA | 1999 | To measure behavioural sequalae of frontal lobe damage and quantify behaviour change as a result of damage. | 46 | 3 | Apathy; Disinhibition; Executive dysfunction | Yes | Grace J, Stout JC, Malloy PF. Assessing frontal lobe behavioral syndromes with the frontal lobe personality scale. Assessment. 1999 Sep;6(3):269-84. Stout JC, Ready RE, Grace J, Malloy PF, Paulsen JS. Factor analysis of the frontal systems behavior scale (FrSBe). Assessment. 2003 Mar;10(1):79-85 |
Yes | Unknown | https://www.parinc.com/products/FRSBE | Nil | Yes | Clarke DE, Ko JY, Kuhl EA, van Reekum R, Salvador R, Marin RS. Are the available apathy measures reliable and valid? A review of the psychometric evidence. Journal of psychosomatic research. 2011 Jan 1;70(1):73-97. Chapman KR, Spitznagel MB. Measurement of sexual disinhibition in dementia: A systematic review. International Journal of Geriatric Psychiatry. 2019 Dec;34(12):1747-57. |
| Injuries and Trauma | Brain injury | La Trobe Communication Questionnaire | LCQ | Australia | 2000 | To measure perceived communicative ability with collection of information from the individual, in addition to the perceptions of close others. | 30 | 6 | Conversational tone; Conversational effectiveness; Conversational flow; Conversational engagement; Conversational (partner) sensitivity; Conversational attention/focus | Yes | Douglas JM, O'Flaherty CA, Snow PC. Measuring perception of communicative ability: The development and evaluation of the La Trobe Communication Questionnaire. Aphasiology. 2000 Mar 1;14(3):251-68. Struchen MA, Pappadis MR, Mazzei DK, Clark AN, Davis LC, Sander AM. Perceptions of communication abilities for persons with traumatic brain injury: Validity of the La Trobe Communication Questionnaire. Brain Injury. 2008 Jan 1;22(12):940-51. |
No information | Unknown | Jacinta Douglas, J.Douglas@latrobe.edu.au | Nil | Yes | Gardner D, Mitchell V, Frakking T, Weir KA, Canning A, Wenke RJ. Validated patient reported outcome measures in speech-language pathology: A scoping review of adult practice. International journal of speech-language pathology. 2024 Sep 30:1-30. Verhoeks C, Bus B, Tendolkar I, Rijnen S. Cognitive communication disorders after brain injury: A systematic COSMIN review of measurement instruments. Annals of Physical and Rehabilitation Medicine. 2024 Sep 1;67(6):101870. |
| Injuries and Trauma | Brain injury | Neurobehavioral Symptom Inventory | NSI | USA | 2012 | To measure severity of post concussion symptoms associated with mild traumatic brain injury. | 22 | 3 | Behaviour; negative affect; cognition | Yes | King PR, Donnelly KT, Donnelly JP, Dunnam M, Warner G, Kittleson CJ, Bradshaw CB, Alt M, Meier ST. Psychometric study of the Neurobehavioral Symptom Inventory. J Rehabil Res Dev. 2012;49(6):879-88. Silva MA. Review of the Neurobehavioral Symptom Inventory. Rehabilitation Psychology. 2021 May;66(2):170. |
Yes | Unknown | https://www.commondataelements.ninds.nih.gov/report-viewer/23032/Neurob… | Nil | ||
| Injuries and Trauma | Brain injury | Post-Concussion Symptom Scale | PCSS | USA | 2006 | To assess the severity of symptoms of concussion. | 22 | 4 | Cognitive-sensory; Sleep-arousal; Vestibular-somatic; Affective | Yes | Lovell MR, Iverson GL, Collins MW, Podell K, Johnston KM, Pardini D, Pardini J, Norwig J, Maroon JC. Measurement of symptoms following sports-related concussion: reliability and normative data for the post-concussion scale. Appl Neuropsychol. 2006;13(3):166-74 Kontos AP, Elbin RJ, Schatz P, Covassin T, Henry L, Pardini J, Collins MW. A revised factor structure for the post-concussion symptom scale: baseline and postconcussion factors. The American journal of sports medicine. 2012 Oct;40(10):2375-84. |
Yes | Unknown | Mark R Lovell, lovellmr@upmc.edu | https://impacttest.com/wp-content/uploads/Post-Concussion-Symptom-Scale.pdf | Yes | Dessy AM, Yuk FJ, Maniya AY, Gometz A, Rasouli JJ, Lovell MR, Choudhri TF. Review of assessment scales for diagnosing and monitoring sports-related concussion. Cureus. 2017 Dec;9(12). Alla S, Sullivan SJ, Hale L, McCrory P. Self-report scales/checklists for the measurement of concussion symptoms: a systematic review. British journal of sports medicine. 2009 May 1;43(Suppl 1):i3-12. |
| Injuries and Trauma | Brain injury | Quality Of Life After Brain Injury Instrument | QOLIBRI | Switzerland | 2005 | To assess health related quality of life after traumatic brain injury. | 37 | 6 | Cognition; self; daily life; autonomy; social relationships; emotions; physical problems | Yes | von Steinbuechel N, Petersen C, Bullinger M, QoLIBRI Group. Assessment of health-related quality of life in persons after traumatic brain injury—development of the Qolibri, a specific measure. Springer Vienna; 2005. von Steinbüchel N, Wilson L, Gibbons H, Hawthorne G, Höfer S, Schmidt S, Bullinger M, Maas A, Neugebauer E, Powell J, Von Wild K. Quality of Life after Brain Injury (QOLIBRI): scale development and metric properties. Journal of neurotrauma. 2010 Jul 1;27(7):1167-85. |
Yes | Yes, fees may apply | https://qolibrinet.com/registration-for-use/ | Nil | Yes | Polinder S, Haagsma JA, van Klaveren D, Steyerberg EW, Van Beeck EF. Health-related quality of life after TBI: a systematic review of study design, instruments, measurement properties, and outcome. Population health metrics. 2015 Dec;13:1-2. |
| Injuries and Trauma | Brain injury | Rivermead Post Concussion Symptoms Questionnaire | RPQ | UK | 1995 | To measure post-concussion symptoms. | 16 | No specific domains/dimensions identified | Yes | King NS, Crawford S, Wenden FJ, Moss NE, Wade DT. The Rivermead Post Concussion Symptoms Questionnaire: a measure of symptoms commonly experienced after head injury and its reliability. J Neurol. 1995 Sep;242(9):587-92 Eyres S, Carey A, Gilworth G, Neumann V, Tennant A. Construct validity and reliability of the Rivermead post-concussion symptoms questionnaire. Clinical rehabilitation. 2005 Dec;19(8):878-87. Gagnon I, Swaine B, Friedman D, Forget R. Exploring children's self-efficacy related to physical activity performance after a mild traumatic brain injury. The Journal of head trauma rehabilitation. 2005 Sep 1;20(5):436-49. Balalla S, Krägeloh C, Medvedev O, Siegert R. Is the Rivermead post-concussion symptoms questionnaire a reliable and valid measure to assess long-term symptoms in traumatic brain injury and orthopedic injury patients? A novel investigation using Rasch analysis. Neurotrauma Reports. 2020 Aug 1;1(1):63-72. |
No information | Unknown | http://www.tbi-impact.org/cde/mod_templates/12_F_06_Rivermead.pdf | None identified in March 2025 | None identified in March 2025 | ||
| Injuries and Trauma | Brain injury | Traumatic Brain Injury Quality Of Life Measurement System | TBI-QOL | USA | 2016 | To measure health related quality of life in individuals with traumatic brain injury. | 191 | 20 | Physical Health (Mobility; Upper Extremity; Fatigue; Pain Interference; Headache Pain); Emotional Health (Positive Affect and Well-being; Depression; Anxiety; Stigma; Resilience; Grief-Loss; Self-esteem; Anger; Emotional and Behavioural Dyscontrol); Cognition (Executive Function; Cognition-General Concerns; Communication/Comprehension); Social Participation (Ability to Participate in Social Roles and Activities; Satisfaction With Social Role and Activities; Independence) | Yes | Tulsky DS, Kisala PA, Victorson D, Carlozzi N, Bushnik T, Sherer M, Choi SW, Heinemann AW, Chiaravalloti N, Sander AM, Englander J. TBI-QOL: development and calibration of item banks to measure patient reported outcomes following traumatic brain injury. The Journal of Head Trauma Rehabilitation. 2016 Jan 1;31(1):40-51. Lange RT, Brickell TA, Bailie JM, Tulsky DS, French LM. Clinical utility and psychometric properties of the Traumatic Brain Injury Quality of Life Scale (TBI-QOL) in US military service members. The Journal of Head Trauma Rehabilitation. 2016 Jan 1;31(1):62-78. |
Yes | Unknown | D Tulsky, dtulsky@udel.edu | Nil | Yes | Rose AE, Cullen B, Crawford S, Evans JJ. A systematic review of mood and depression measures in people with severe cognitive and communication impairments following acquired brain injury. Clinical rehabilitation. 2023 May;37(5):679-700. |
| Injuries and Trauma | Brain Injury - Caregivers | Traumatic Brain Injury Caregiver Quality of Life | TBI-CareQOL | USA | 2019 | To assess general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI). | 124 | 5 | Caregiver strain; Caregiver-specific anxiety; Feeling trapped; Feelings of loss-Self; Feelings of Loss-Person with TBI | Yes | Carlozzi NE, Kallen MA, Hanks R, Hahn EA, Brickell TA, Lange RT, French LM, Kratz AL, Tulsky DS, Cella D, Miner JA. The TBI-CareQOL Measurement System: Development and preliminary validation of health-related quality of life measures for caregivers of civilians and service members/veterans with traumatic brain injury. Archives of Physical Medicine and Rehabilitation. 2019 Apr 1;100(4):S1-2. Carlozzi NE, Kallen MA, Ianni PA, Sander AM, Hahn EA, Lange RT, Brickell TA, French LM, Miner JA, Hanks R. The development of two new computer adaptive tests to evaluate feelings of loss in caregivers of individuals with traumatic brain injury: TBI-CareQOL feelings of loss-self and feelings of loss-person with traumatic brain injury. Archives of physical medicine and rehabilitation. 2019 Apr 1;100(4):S31-42. |
Yes | Unknown | https://www.tbicareqol.com/using-tbicareqol/obtain-tbicareqol-measures | Nil | None identified in March 2025 | None identified in March 2025 |
| Injuries and Trauma | Burns | Burn Outcome Questionnaire - 11 to 18 years old | BOQ 11-18 | USA | 2012 | To assess burn outcomes in children aged 11 to 18. | 53 | 12 | Upper extremity function; Physical function and sports; Transfers and mobility; Pain; Appearance; Compliance; Satisfaction with current state; Emotional health; Family Disruption; Parental concern; School re-entry | Yes | Meyer 3rd WJ, Lee AF, Kazis LE, Li NC, Sheridan RL, Herndon DN, Hinson MI, Stubbs TK, Kagan RJ, Palmieri TL, Tompkins RG. Multi-Center Benchmarking Study Working Group Adolescent survivors of burn injuries and their parents’ perceptions of recovery outcomes: do they agree or disagree. Trauma Acute Care Surg. 2012;73(3 Suppl 2):S213-20. | No information | Unknown | C Ryan, cryan@mgh.harvard.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Injuries and Trauma | Burns | Burn Specific Health Scale | BSHS | USA | 1982 | To measure burns specific health outcomes. | 114 | 9 | Hand function; simple abilities; heat specificity; treatment regimens; affect; work; sexuality; interpersonal relationship; body imagine | Yes | Blades B, Mellis N, Munster AM. A burn specific health scale. Journal of Trauma and Acute Care Surgery. 1982 Oct 1;22(10):872-5. Yoder LH, Nayback AM, Gaylord K. The evolution and utility of the burn specific health scale: a systematic review. Burns. 2010 Dec 1;36(8):1143-56. |
No information | Unknown | bengt.gerdin@plastik.uu.se | Nil | Yes | Legemate CM, Spronk I, Mokkink LB, Middelkoop E, Polinder S, van Baar ME, van der Vlies CH. Evaluation of measurement properties of health-related quality of life instruments for burns: A systematic review. Journal of trauma and acute care surgery. 2020 Apr 1;88(4):555-71. |
| Injuries and Trauma | Burns | Burnt Hand Outcome Tool | BHOT | UK | 2018 | To measure aspects of the impact of a hand burn on a patient across specific hand tasks; general ability to carry out daily activities; appearance, scar, pain and sensation; and emotional, social and work impact. | 20 | No specific domains/dimensions identified | Yes | Bache SE, Fitzgerald O'Connor E, Drake PJH, Philp B, Dziewulski P. Development and validation of the Burnt Hand Outcome Tool (BHOT): A patient-led questionnaire for adults with hand burns. Burns. 2018 Dec;44(8):2087-2098. doi: 10.1016/j.burns.2018.07.014. Epub 2018 Aug 27. PMID: 30166198. | No information | Unknown | Sarah E Bache, sarahbache@doctors.org.uk | Nil | Yes | Itakussu EY, Morita AA, Kakitsuka EE, Pitta F, Cavalheri V, Hernandes NA. Instruments to assess function or functionality in adults after a burn injury: A systematic review. Burns. 2021 Aug 1;47(5):999-1011. | |
| Injuries and Trauma | Burns | CARe Burn Scale-Adult Scale | UK | 2019 | To assess quality of life for adults living with a burn injury. | 53 | 14 | 12 individual scales (Wound/Scar Discomfort; Wound/Scar Dissatisfaction; Physical Wellbeing; Social Situations; Self-Worth; Negative Mood; Work Life; Family Support; Friend Support; Intimacy; Trauma Symptoms; Positive Growth) and 2 checklists (Wound/Scar Treatment; Avoidance Behaviours). | Yes | Griffiths C, Guest E, Pickles T, Hollén L, Grzeda M, White P, Tollow P, Harcourt D. The development and validation of the CARe Burn Scale—Adult Form: A Patient-Reported Outcome Measure (PROM) to assess quality of life for adults living with a burn injury. Journal of Burn Care & Research. 2019 Apr 26;40(3):312-26. | Yes | Unknown | https://careburnscales.org.uk/background/ | https://careburnscales-org-uk.stackstaging.com/wp-content/uploads/2024/07/Adult-CARe-Burn-Scale_2021.pdf | None identified in March 2025 | None identified in March 2025 | |
| Injuries and Trauma | Burns | Life Impact Burn Recovery Evaluation Profile | LIBRE | USA | 2017 | To assess critical aspects of social participation for persons with burn injury. | 30 to 60 | 6 | Relationships with family and friends; Social interactions; Social activities; Work and employment; Romantic relationships; Sexual relationships | Yes | Kazis LE, Marino M, Ni P, Soley Bori M, Amaya F, Dore E, Ryan CM, Schneider JC, Shie V, Acton A, Jette AM. Development of the life impact burn recovery evaluation (LIBRE) profile: assessing burn survivors’ social participation. Quality of life research. 2017 Oct;26:2851-66. Dore EC, Marino M, Ni P, Lomelin-Gascon J, Sonis L, Amaya F, Ryan CM, Schneider JC, Jette AM, Kazis LE. Reliability & validity of the LIBRE Profile. Burns. 2018 Nov 1;44(7):1750-8. Slavin MD, Ryan CM, Schneider JC, Acton A, Amaya F, Saret C, Ohrtman E, Wolfe A, Ni P, Kazis LE. Interpreting Life Impact Burn Recovery Evaluation Profile Scores for Use by Clinicians, Burn Survivors, and Researchers. J Burn Care Res. 2021 Feb 3;42(1):23-31. doi: 10.1093/jbcr/iraa100. PMID: 32556266; PMCID: PMC8265741. |
Yes | Unknown | https://spauldingrehab.org/research/programs-labs/rehabilitation-outcomes-center/life-impact-burn-recovery-evaluation | Nil | None identified in March 2025 | None identified in March 2025 |
| Injuries and Trauma | Burns | Satisfaction With APpearance Scale | SWAP | USA | 1998 | To assess both subjective appraisal and social-behavioural components of body image among burn survivors. | 14 | 4 | Social distress; Facial features; Non-facial features; Perceived social impact | Yes | Lawrence JW, Heinberg LJ, Roca R, Munster A, Spence R, Fauerbach JA. Development and validation of the Satisfaction With Appearance Scale: Assessing body image among burn-injured patients. Psychological Assessment. 1998 Mar;10(1):64. | No information | Unknown | John Lawrence, John Hopkins University School of Medicine | https://www.researchgate.net/profile/Leslie-Heinberg/publication/232561056_Development_and_validation_of_the_Satisfaction_With_Appearance_Scale_Assessing_body_image_among_burn-injured_patients/links/02bfe50c88b6dd2c34000000/Development-and-Validation-of-the-Satisfaction-With-Appearance-Scale-Assessing-Body-Image-Among-Burn-Injured-Patients.pdf | Yes | Griffiths C, Armstrong-James L, White P, Rumsey N, Pleat J, Harcourt D. A systematic review of patient reported outcome measures (PROMs) used in child and adolescent burn research. Burns. 2015 Mar 1;41(2):212-24. Griffiths C, Guest E, White P, Gaskin E, Rumsey N, Pleat J, Harcourt D. A systematic review of patient-reported outcome measures used in adult burn research. Journal of Burn Care & Research. 2017 Mar 1;38(2):e521-45. |
| Injuries and Trauma | Orthopaedic trauma | Chertsey Outcome Score For Trauma | COST | UK | 2017 | To measure the extent to which orthopaedic trauma patients manage to return to their pre-injury state. | 11 | 3 | Symptoms; Function; Mental status | Yes | Iliopoulos E, Agarwal S, Khaleel A. Chertsey Outcome Score for Trauma: development and validation of a new unifying patient reported outcome measure for orthopaedic trauma. Chinese journal of traumatology. 2017 Dec 1;20(06):329-32. | No information | Unknown | Johnson & Johnson Consumer Inc., McNeil Consumer Healthcare DivisionJohnson & Johnson Consumer Inc., McNeil Consumer Healthcare Division | https://pmc.ncbi.nlm.nih.gov/articles/pmid/29198714/ | None identified in March 2025 | None identified in March 2025 |
| Injuries and Trauma | Spinal cord injuries | AOSpine Patient Reported Outcome Spine Trauma | AOSpine PROST | Canada; USA | 2020 | To provide a disease-specific outcome measure for spine trauma patients. | 19 | No specific domains/dimensions identified | Yes | Sadiqi S, Dvorak MF, Vaccaro AR, Schroeder GD, Post MW, Benneker LM, Kandziora F, Rajasekaran S, Schnake KJ, Vialle EN, Oner FC. Reliability and validity of the English version of the AOSpine PROST (Patient Reported Outcome Spine Trauma). Spine. 2020 Sep 1;45(17):E1111-8. | Yes | Unknown | https://www.aofoundation.org/spine/clinical-library-and-tools/outcome-instruments | None identified in March 2025 | None identified in March 2025 | ||
| Injuries and Trauma | Spinal cord injuries | Attachment Style Questionnaire‐Short Form | ASQ‐SF | USA | 2018 | To measure adult attachment according to the fundamental attachment domains of secure, anxious and avoidant in clinical rehabilitation research and practice and for use with people with disabilities. | 12 | 3 | Secure; Anxious; Avoidant | Yes | Iwanaga K, Blake J, Yaghmaian R, Umucu E, Chan F, Brooks JM, Rahimi M, Tansey TN. Preliminary validation of a short-form version of the attachment style questionnaire for use in clinical rehabilitation counseling research and practice. Rehabilitation Counseling Bulletin. 2018 Jul;61(4):205-16. | No information | Unknown | Kanako Iwanaga, iwanaga2@wisc.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Injuries and Trauma | Spinal cord injuries | Craig Handicap Assessment and Reporting Technique | CHART | USA | 1992 | To measure the level of handicap in a community setting across domains of physical independence, mobility, occupation, social integration, and economic self-sufficiency. | 38 | 5 | Physical independence; Mobility; Occupational status; Social integration; Economic self-sufficiency | Yes | Whiteneck GG, Charlifue SW, Gerhart KA, Overholser JD, Richardson GN. Quantifying handicap: a new measure of long-term rehabilitation outcomes. Arch Phys Med Rehabil. 1992 Jun;73(6):519-26 Hall K, Dijkers M, Whiteneck G, Brooks CA, Krause JS. The Craig handicap assessment and reporting technique (CHART): metric properties and scoring. Topics in Spinal Cord Injury Rehabilitation. 1998 Jul 1;4(1):16-30. |
No copYesright or publiclYes available | Unknown | https://www.sralab.org/rehabilitation-measures/craig-handicap-assessment-and-reporting-technique | None identified in March 2025 | None identified in March 2025 | |
| Injuries and Trauma | Spinal cord injuries | Patient Reported Impact of Spasticity Measure | PRISM | USA | 2007 | To measure the impact of spasticity on affected persons' quality of life. | 41 | 7 | Social avoidance/anxiety; Psychological agitation; Daily activities; Need for assistance/positioning; Positive impact; Need for intervention; Social embarrassment | Yes | Cook KF, Teal CR, Engebretson JC, Hart KA, Mahoney JS, Robinson-Whelen S, Sherwood AM. Development and validation of Patient Reported Impact of Spasticity Measure (PRISM). J Rehabil Res Dev. 2007;44(3):363-71. | Yes | Unknown | Karon F Cook, karonc2@u.washington.edu | Nil | Yes | Hill MR, Noonan VK, Sakakibara BM, Miller WC. Quality of life instruments and definitions in individuals with spinal cord injury: a systematic review. Spinal cord. 2010 Jun;48(6):438-50. |
| Injuries and Trauma | Spinal cord injuries | Pediatric Measure of Participation | PMoP | USA | 2009 | To evaluate activity performance and participation in children and adolescents with spinal cord injury. | 20 to 30 | 2 | Self-participation; Friend-participation | Yes | Calhoun CL, Haley SM, Riley A, Vogel LC, McDonald CM, Mulcahey MJ. Development of items designed to evaluate activity performance and participation in children and adolescents with spinal cord injury. International Journal of Pediatrics. 2009;2009(1):854904. Mulcahey MJ, Calhoun CL, Tian F, Ni P, Vogel LC, Haley SM. Evaluation of newly developed item banks for child-reported outcomes of participation following spinal cord injury. Spinal cord. 2012 Dec;50(12):915-9. Mulcahey MJ, Slavin MD, Ni P, Vogel LC, Thielen CC, Coster WJ, Jette AM. The pediatric measure of participation (PMoP) short forms. Spinal Cord. 2016 Dec;54(12):1183-7. Mulcahey MJ, Thielen CC, Slavin MD, Ni P, Jette AM. Pediatric measure of participation short forms version 2.0: development and evaluation. Spinal Cord. 2021 Nov;59(11):1146-54. |
Yes | Unknown | https://www.jefferson.edu/academics/colleges-schools-institutes/rehabilitation-sciences/departments/outcomes-measurement/measures-assessments/pediatric-measure-participation-short-forms.html | Yes | Jeong Y, Kim S, Lee JA, Kim H. Child and adolescent participation measurement tools and their translations: A systematic review. Child: Care, Health and Development. 2024 Mar;50(2):e13248. | |
| Injuries and Trauma | Spinal cord injuries | Pediatric Spinal Cord Injury Activity Measure | PEDI-SCI AM | USA | 2016 | To measure activity limitation outcomes in youth with spinal cord injury. | 299 | 4 | General mobility; Daily routines; Wheeled mobility; Ambulation | Yes | Slavin MD, Mulcahey MJ, Calhoun Thielen C, Ni P, Vogel LC, Haley SM, Jette AM. Measuring activity limitation outcomes in youth with spinal cord injury. Spinal Cord. 2016 Jul;54(7):546-52 | Yes | Unknown | https://www.jefferson.edu/academics/colleges-schools-institutes/rehabilitation-sciences/departments/outcomes-measurement/measures-assessments/pediatric-spinal-cord-injury-activity-measures-short-forms.html | None identified in March 2025 | None identified in March 2025 | |
| Injuries and Trauma | Spinal cord injuries | Self-reported Functional Measure | SRFM | USA | 1998 | To measure the different levels of disease, impairment, and function in patients with spinal cord dysfunction. | 24 | No specific domains/dimensions identified | Yes | Hoenig H, McIntyre L, Sloane R, Branch LG, Truncali A, Horner RD. The reliability of a self-reported measure of disease, impairment, and function in persons with spinal cord dysfunction. Archives of Physical Medicine and Rehabilitation. 1998 Apr 1;79(4):378-87. Hoenig H, Branch LG, McIntyre L, Hoff J, Horner RD. The validity in persons with spinal cord injury of a self-reported functional measure derived from the functional independence measure. Spine. 1999 Mar 15;24(6):539-43. Hoenig H, Hoff J, McIntyre L, Branch LG. The self-reported functional measure: predictive validity for health care utilization in multiple sclerosis and spinal cord injury. Archives of Physical Medicine and Rehabilitation. 2001 May 1;82(5):613-8. |
No information | Unknown | https://www.sciencedirect.com/science/article/pii/S000399939890137X | None identified in March 2025 | None identified in March 2025 | ||
| Injuries and Trauma | Spinal cord injuries | Spinal Cord Injury – Quality of Life measurement system | SCI-QOL | USA | 2015 | To evaluate quality of life in individuals with spinal cord injury. | 154 to 242 | 22 | Pain interference; Pain behaviour; Bladder management difficulties; Bowel management difficulties; Pressure ulcers; Bladder complications; Positive affect & wellbeing; Depression; Anxiety; Stigma; Resilience; Grief/loss; Self-esteem; Psychological trauma; Ability to participate in social roles and activities; Satisfaction with social roles and activities; Independence; Ambulation; Basic mobility; Fine motor function; Self care; Wheelchair mobility | Yes | Tulsky DS, Kisala PA, Victorson D, Choi SW, Gershon R, Heinemann AW, Cella D. Methodology for the development and calibration of the SCI-QOL item banks. J Spinal Cord Med. 2015 May;38(3):270-87 Tulsky DS, Kisala PA. The Spinal Cord Injury–Quality of Life (SCI-QOL) measurement system: development, psychometrics, and item bank calibration. The journal of spinal cord medicine. 2015 May 1;38(3):251-6. Tulsky DS, Kisala PA, Victorson D, Tate DG, Heinemann AW, Charlifue S, Kirshblum SC, Fyffe D, Gershon R, Spungen AM, Bombardier CH. Overview of the spinal cord injury–quality of life (SCI-QOL) measurement system. The journal of spinal cord medicine. 2015 May 1;38(3):257-69. |
Yes | Unknown | David S Tulsky, dtulsky@udel.edu or SCI-QOL@udel.edu | Nil | Yes | Almeida LD, de Lima A, Sprizon GS, Ilha J. Measurement properties of assessment instruments of quality of life in people with spinal cord injury: A systematic review. The Journal of Spinal Cord Medicine. 2024 Jan 2;47(1):15-50. van Alphen TC, Ter Brugge F, van Haren EL, Hoogbergen MM, Rakhorst H. SCI-QOL and WOUND-Q have the best patient-reported outcome measure design: a systematic literature review of PROMs used in chronic wounds. Plastic and Reconstructive Surgery–Global Open. 2023 Jan 1;11(1):e4723. |
| Injuries and Trauma | Spinal cord injuries | Spinal Cord Injury Exercise Self-Efficacy Scale | ESES | UK | 2007 | To assess exercise self-efficacy in people with spinal cord injury. | 10 | No specific domains/dimensions identified | Yes | Kroll T, Kehn M, Ho PS, Groah S. The SCI Exercise Self-Efficacy Scale (ESES): development and psychometric properties. Int J Behav Nutr Phys Act. 2007 Aug 30;4:34 | No information | Unknown | https://scireproject.com/outcome/eses/ | None identified in March 2025 | None identified in March 2025 | ||
| Injuries and Trauma | Spinal cord injuries | Spinal Cord Injury Secondary Conditions Scale | SCI-SCS | USA | 2007 | To assess the frequency of secondary conditions associated with spinal cord injury, including areas of skin, musculoskeletal, and pain. | 16 | No specific domains/dimensions identified | Yes | Kalpakjian CZ, Scelza WM, Forchheimer MB, Toussaint LL. Preliminary reliability and validity of a Spinal Cord Injury Secondary Conditions Scale. J Spinal Cord Med 2007;30: 131–139 Arora M, Harvey LA, Lavrencic L, Bowden JL, Nier L, Glinsky JV, Hayes AJ, Cameron ID. A telephone-based version of the spinal cord injury–secondary conditions scale: a reliability and validity study. Spinal Cord. 2016 May;54(5):402-5. |
No information | Unknown | https://scireproject.com/outcome/spinal-cord-injury-secondary-conditions-scale-sciscs/ | Yes | Patel DP, Elliott SP, Stoffel JT, Brant WO, Hotaling JM, Myers JB. Patient reported outcomes measures in neurogenic bladder and bowel: a systematic review of the current literature. Neurourology and urodynamics. 2016 Jan;35(1):8-14. | ||
| Injuries and Trauma | Spinal cord injuries | Spinal Cord Injury-Falls Concern Scale | SCI-FCS | Australia | 2010 | To assess concern about falling in people with spinal cord injuries who are dependent on manual chairs. | 16 | 3 | Concern during activities requiring minimal movement of the body's centre of mass; Activities that involve a large shift of the body's centre of mass; Activities that require pushing a wheelchair under different conditions, requiring additional shifts of the body's centre of mass outside the base of support | Yes | Boswell-Ruys CL, Harvey LA, Delbaere K, Lord SR. A Falls Concern Scale for people with spinal cord injury (SCI-FCS). Spinal Cord. 2010 Sep;48(9):704-9. doi: 10.1038/sc.2010.1. Epub 2010 Feb 2. PMID: 20125107. | No information | Unknown | https://www.nature.com/articles/sc20101/tables/6 | Yes | Dabkowski E, Missen K, Duncan J, Cooper S. Falls risk perception measures in hospital: a COSMIN systematic review. Journal of Patient-Reported Outcomes. 2023 Jun 26;7(1):58. | |
| Injuries and Trauma | Spinal cord injuries | Spinal Cord Injury–Functional Index | SCI-FI | USA | 2012 | To assess multiple aspects of physical functioning relevant to the lives of people with spinal cord injury and to evaluate the underlying structure of physical functioning. | 71 | 6 | Basic mobility; Self-care; Fine motor; Ambulation; Manual wheelchair; Power wheelchair | Yes | Jette AM, Tulsky DS, Ni P, Kisala PA, Slavin MD, Dijkers MP, Heinemann AW, Tate DG, Whiteneck G, Charlifue S, Houlihan B. Development and initial evaluation of the spinal cord injury-functional index. Archives of physical medicine and rehabilitation. 2012 Oct 1;93(10):1733-50. | No information | Unknown | sci-qol@udel.edu | Nil | Yes | Tomaschek R, Gemperli A, Rupp R, Geng V, Scheel-Sailer A. A systematic review of outcome measures in initial rehabilitation of individuals with newly acquired spinal cord injury: providing evidence for clinical practice guidelines. European journal of physical and rehabilitation medicine. 2019 Jun 4;55(5):605-17. |
| Injuries and Trauma | Spinal cord injuries | Spinal Cord Injury–Functional Index short forms | SCI-FI SFs | USA | 2014 | To assess multiple aspects of physical functioning relevant to the lives of people with spinal cord injury (SCI) and to evaluate the underlying structure of physical functioning. | 10 | 6 | Basic mobility; Self-care; Fine motor; Ambulation; Manual wheelchair; Power wheelchair | Yes | Heinemann AW, Dijkers MP, Ni P, Tulsky DS, Jette A. Measurement properties of the spinal cord injury-functional index (SCI-FI) short forms. Archives of physical medicine and rehabilitation. 2014 Jul 1;95(7):1289-97. | No information | Unknown | sci-qol@udel.edu | Nil | Yes | Tomaschek R, Gemperli A, Rupp R, Geng V, Scheel-Sailer A. A systematic review of outcome measures in initial rehabilitation of individuals with newly acquired spinal cord injury: providing evidence for clinical practice guidelines. European journal of physical and rehabilitation medicine. 2019 Jun 4;55(5):605-17. |
| Injuries and Trauma | Spinal cord injuries | Tetraplegic Upper Limb Activities Questionnaire | TUAQ | New Zealand; Sweden | 2022 | To assess upper limb activity in patients with tetraplegia. | 10 | 2 | Performance; Satisfaction | Yes | Wangdell J, Hill B, Dunn JA. Development, Internal Construct, and Unidimensionality of the Tetraplegia Upper Limb Activities Questionnaire, TUAQ. Part 1. Archives of Physical Medicine and Rehabilitation. 2022 Nov 1;103(11):2189-96. Wangdell J, Hill B, Dunn JA. Reproducibility, Construct Validity, and Responsiveness of the Tetraplegia Upper Limb Activities Questionnaire, TUAQ. Part 2. Archives of Physical Medicine and Rehabilitation. 2022 Dec;103(12):2296-2302. doi: 10.1016/j.apmr.2022.05.001. Epub 2022 May 18. PMID: 35595067. |
No information | Unknown | https://osf.io/rcfhz/ | None identified in March 2025 | None identified in March 2025 | |
| Injuries and Trauma | Whiplash | Neck Disability Index | NDI | Canada | 1991 | To assess activities of daily living of sufferers from disabling neck pain, particularly from whiplash-type injuries. | 10 | No specific domains/dimensions identified | Yes | Vernon H, Mior S. The Neck Disability Index: a study of reliability and validity. Journal of manipulative and physiological therapeutics. 1991 Sep 1;14(7):409-15. | Yes | Unknown | H Vernon, Division of Research, Canadian Memorial Chiropractic College, Toronto, Ontario | https://www.worksafe.qld.gov.au/__data/assets/pdf_file/0018/17532/neck-disability-index1.pdf | Yes | Pietrobon R, Coeytaux RR, Carey TS, Richardson WJ, DeVellis RF. Standard scales for measurement of functional outcome for cervical pain or dysfunction: a systematic review. Spine. 2002 Mar 1;27(5):515-22. | |
| Kidney and urinary | Advanced kidney disease | Integrated Palliative Outcome Score-Renal | IPOS-Renal | Australia | 2018 | To assess symptom burden in advanced renal disease . | 11 | 4 | Symptoms; Information needs; Practical issues; Family anxiety | Yes | Raj R, Ahuja K, Frandsen M, Murtagh FE, Jose M. Validation of the IPOS-renal symptom survey in advanced kidney disease: a cross-sectional study. Journal of pain and symptom management. 2018 Aug 1;56(2):281-7. | PubliclYes available | Unknown | palliativecare@pos-pal.org | https://pos-pal.org/maix/ipos-renal.php#renglish | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | End stage renal disease | CHOICE Health Experience Questionnaire | CHEQ | USA | 2001 | To evaluate the effectiveness of alternative dialysis prescriptions. | 83 | 21 | Physical functioning; Role-physical; Bodily pain; General health; Vitality; Social functioning; Role-emotional; Mental health; CHEQ mental health; CHEQ role-physical; Freedom; Travel; Cognitive functioning; Finances; Dietary restrictions; Recreation; Work; Body image; Sexual functioning; Sleep; Access-related problems; Quality of life | Yes | Wu AW, Fink NE, Cagney KA, Bass EB, Rubin HR, Meyer KB, Sadler JH, Powe NR. Developing a health-related quality-of-life measure for end-stage renal disease: The CHOICE Health Experience Questionnaire. American Journal of Kidney Diseases. 2001 Jan 1;37(1):11-21. | No information | Unknown | Albert W. Wu, MD, Departments of Health Policy and Management and Epidemiology, Johns Hopkins University School of Hygiene and Public Health, Baltimore, MD 21205-2223, USA. | Nil | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | Kidney Calculi | Wisconsin Stone Quality Of Life Questionnaire | WISQOL | USA | 2013 | To assess health related quality of life in patients who form kidney stones. | 28 | 4 | Social; Emotional; Stone-related symptom impact; Vitality | Yes | Penniston KL, Nakada SY. Development of an instrument to assess the health related quality of life of kidney stone formers. The Journal of urology. 2013 Mar;189(3):921-30. Penniston KL, Antonelli JA, Viprakasit DP, Averch TD, Sivalingam S, Sur RL, Pais VM, Chew BH, Bird VG, Nakada SY. Validation and reliability of the Wisconsin stone quality of life questionnaire. The Journal of urology. 2017 May;197(5):1280-8. |
Yes | Unknown | Wisconsin Stone QOL, copyright 2016, created by Kristina L. Penniston, PhD, et al, University of Wisconsin-Madison, Department of Urology - All Rights Reserved by the Wisconsin Alumni Research Foundation (WARF) | Nil | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | Kidney disease; Dialysis | Kidney Disease Quality Of Life | KDQOL | USA | 1994 | To assess the quality of life concerns of individuals with kidney disease and on dialysis. | 134 | 9 | Physical functioning; Role limitations caused by physical health problems; Role caused by physical health problems; Role limitations caused by emotional health problems; Well-being social functioning; Emotional; Pain; Energy/fatigue; General health perceptions | Yes | Hays RD, Kallich JD, Mapes DL, Coons SJ, Carter WB. Development of the kidney disease quality of life (KDQOL) instrument. Qual Life Res. 1994 Oct;3(5):329-38. | Yes | Unknown | https://www.rand.org/health-care/surveys_tools/kdqol.html | Nil | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | Overactive bladder | OverActive Bladder Family Impact Measure | OAB-FIM | USA | 2010 | To assess the impact of overactive bladder on family members. | 19 | 4 | Irritation; Activities; Travel; Concern | Yes | Coyne KS, Matza LS, Brewster-Jordan J. "We have to stop again?!": The impact of overactive bladder on family members. Neurourol Urodyn. 2009;28(8):969-75. Coyne KS, Matza LS, Brewster-Jordan J, Thompson C, Bavendam T. The psychometric validation of the OAB family impact measure (OAB-FIM). Neurourol Urodyn. 2010 Mar;29(3):359-69. |
Yes | Unknown | College of Pharmacy, University of Houston, 1441 Moursund Street, Houston, TX, 77030, USA | Nil | Yes | Shah R, Ali FM, Finlay AY, Salek MS. Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature. Health and quality of life outcomes. 2021 Dec;19:1-35. |
| Kidney and urinary | Overactive bladder | Overactive Bladder questionnaire Short Form | OABqSF | USA | 2004 | To evaluate both continent and incontinent symptoms of overactive bladder and their impact on health-related quality of life. | 19 | 5 | Symptom bother scale; 4 HRQoL scales: coping, concern, sleep, social interaction | Yes | Coyne KS, Lai JS, Zyczynski T, Kopp Z, Avery K, Abrams P. An overactive bladder symptom and quality-of-life short form: development of the Overactive Bladder Questionnaire (OAB-q) short form (SF). Presented at the Joint Meeting of the International Continence Society and the International Urogynecological Association; August 23-27, 2004; Paris, France. Coyne KS, Thompson CL, Lai JS, Sexton CC. An overactive bladder symptom and health‐related quality of life short‐form: validation of the OAB‐q SF. Neurourology and urodynamics. 2015 Mar;34(3):255-63. |
PubliclYes available | Unknown | https://www.urologygroup.com/wp-content/uploads/2021/02/OAB_Questionnaire_9_17_2020.pdf | Yes | Ali MU, Winser SJ, Kannan P, Kranz GS, Fong KN. Clinical tools for evaluating the severity of overactive bladder: A systematic review of psychometric properties. Clinical Rehabilitation. 2024 May;38(5):636-46. | |
| Kidney and urinary | Overactive bladder | Overactive Bladder Symptom Score | OABSS | Japan | 2006 | To quantify Overactive Bladder symptoms in a single score. | 4 | No specific domains/dimensions identified | Yes | Homma Y, Yoshida M, Seki N, Yokoyama O, Kakizaki H, Gotoh M, Yamanishi T, Yamaguchi O, Takeda M, Nishizawa O. Symptom assessment tool for overactive bladder syndrome—overactive bladder symptom score. Urology. 2006 Aug 1;68(2):318-23. Homma Y, Gotoh M. Symptom severity and patient perceptions in overactive bladder: how are they related? BJU Int. 2009 Oct;104(7):968-72. |
PubliclYes available | Unknown | https://globalrph.com/medcalcs/overactive-bladder-symptom-score-oabss/ | Yes | Shah R, Ali FM, Finlay AY, Salek MS. Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature. Health and quality of life outcomes. 2021 Dec;19:1-35. | ||
| Kidney and urinary | Overactive bladder | Patient Perception of Bladder Condition | PPBC | USA | 2005 | To assess the patients' perception of their urinary (bladder) problems. | 1 | No specific domains/dimensions identified | Yes | Matza LS, Thompson CL, Krasnow J, Brewster-Jordan J, Zyczynski T, Coyne KS. Test-retest reliability of four questionnaires for patients with overactive bladder: the overactive bladder questionnaire (OAB-q), patient perception of bladder condition (PPBC), urgency questionnaire (UQ), and the primary OAB symptom questionnaire (POSQ). Neurourol Urodyn. 2005;24(3):215-25. Coyne KS, Matza LS, Kopp Z, Abrams P. The validation of the patient perception of bladder condition (PPBC): a single-item global measure for patients with overactive bladder. European urology. 2006 Jun 1;49(6):1079-86. |
Yes | Unknown | Louis Matza, MEDTAP International, Inc., Bethesda, Maryland | Nil | Yes | Best KL, Ethans K, Craven BC, Noreau L, Hitzig SL. Identifying and classifying quality of life tools for neurogenic bladder function after spinal cord injury: A systematic review. The journal of spinal cord medicine. 2017 Sep 3;40(5):505-29. | |
| Kidney and urinary | Overactive bladder | Patient Perception of Intensity of Urgency Scale | PPIUS | USA | 2012 | To measure the intensity of urgency associated with each urinary or incontinence episode. | 1 | No specific domains/dimensions identified | Yes | Notte SM, Marshall TS, Lee M, Hakimi Z, Odeyemi I, Chen WH, Revicki DA. Content validity and test-retest reliability of Patient Perception of Intensity of Urgency Scale (PPIUS) for overactive bladder. BMC Urol. 2012 Sep 7;12:26. Cartwright R, Srikrishna S, Cardozo L, Robinson D. Validity and reliability of the patient’s perception of intensity of urgency scale in overactive bladder. BJU international. 2011 May;107(10):1612-7. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/patient-perception-of-intensity-of-urgency-scale | Nil | Yes | Bright E, Drake MJ, Abrams P. Urinary diaries: evidence for the development and validation of diary content, format, and duration. Neurourology and urodynamics. 2011 Mar;30(3):348-52. | |
| Kidney and urinary | Pelvic floor disorders | Urogenital Distress Inventory | UDI | USA | 1994 | To measure symptoms associated with lower urinary tract dysfunction. | 19 | 3 | Stress; Irritative; Obstructive/discomfort | Yes | Shumaker SA, Wyman JF, Uebersax JS, McClish D, Fantl JA, Continence Program in Women (CPW) Research Group. Health-related quality of life measures for women with urinary incontinence: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Quality of life Research. 1994 Oct;3:291-306. Uebersax JS, Wyman JF, Shumaker SA, McClish DK. Short forms to assess life quality and symptom distress for urinary incontinence in women: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Neurourology and urodynamics. 1995;14(2):131-9. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/urogenital-distress-invento… https://eprovide.mapi-trust.org/instruments/urogenital-distress-invento… |
https://link.springer.com/article/10.1007/BF00451721 | Yes | Loganathan J, Coffey J, Doumouchtsis SK, CHORUS: An International Collaboration for Harmonising Outcomes, Research and Standards in Urogynaecology and Women’s Health. Which patient reported outcomes (PROs) and patient reported outcome measures (PROMs) do researchers select in stress urinary incontinence surgical trials?–a systematic review. International Urogynecology Journal. 2022 Nov;33(11):2941-9. Ali MU, Fong KN, Kannan P, Winser SJ, Bello UM, Salihu D, Kranz GS. Measures of quality of life of people with neurogenic overactive bladder: A systematic review of psychometric properties. European Journal of Obstetrics & Gynecology and Reproductive Biology. 2024 Jan 1;292:40-57. |
| Kidney and urinary | Renal dialysis | Short- Form Vascular Access Questionnaire | SF-VAQ | Canada | 2015 | To assess haemodialysis patients' satisfaction with their vascular access. | 13 | 4 | Overall satisfaction; Physical symptoms; Social functioning; Complications | Yes | Kosa SD, Bhola C, Lok CE. Measuring patient satisfaction with vascular access: vascular access questionnaire development and reliability testing. The Journal of Vascular Access. 2015 May;16(3):200-5. | No information | Unknown | Sarah Kosa, University Health Network-Toronto General Hospital, Toronto - Canada | Nil | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | Renal failure | End-Stage Renal Disease Adherence Questionnaire | ESRD-AQ | USA | 2010 | To measure treatment adherence to haemodialysis attendance, medications, fluid restrictions, and diet prescription among patients with end stage renal disease. | 46 | 4 | HD attendance; Medication use; Fluid restrictions; Diet recommendations | Yes | Kim Y, Evangelista LS, Phillips LR, Pavlish C, Kopple JD. The End-Stage Renal Disease Adherence Questionnaire (ESRD-AQ): testing the psychometric properties in patients receiving in-center hemodialysis. Nephrol Nurs J. 2010 Jul-Aug;37(4):377-93. | No information | Unknown | Youngmee Kim, Division of Nephrology and Hypertension, Harbor-UCLA Medical Center, Torrance, CA | Nil | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | Renal failure | Illness Intrusiveness Ratings Scale | IIRS | Canada | 2010 | To measure the extent to which disease or its treatment or both interfere with activities in important life domains. | 13 | 3 | Relationships and Personal Development; Intimacy; Instrumental | Yes | Devins GM. Using the illness intrusiveness ratings scale to understand health-related quality of life in chronic disease. J Psychosom Res. 2010 Jun;68(6):591-602. Devins GM, Dion R, Pelletier LG, Shapiro CM, Abbey S, Raiz LR, Binik YM, McGowan P, Kutner NG, Beanlands H, Edworthy SM. Structure of lifestyle disruptions in chronic disease: a confirmatory factor analysis of the Illness Intrusiveness Ratings Scale. Medical care. 2001 Oct 1;39(10):1097-104. |
Yes | Unknown | Gerald Devins, Ontario Cancer Institute, Princess Margaret Hospital, and University of Toronto | Nil | Yes | Caton E, Sharma S, Vilar E, Farrington K. Measures of treatment burden in dialysis: A scoping review. Journal of Renal Care. 2024 Sep;50(3):212-22. Edgell ET, Coons SJ, Carter WB, Kallich JD, Mapes D, Damush TM, Hays RD. A review of health-related quality-of-life measures used in end-stage renal disease. Clinical therapeutics. 1996 Sep 1;18(5):887-938. |
| Kidney and urinary | Renal failure | Patient-reported symptom assessment tool for children with CKD/kidney failure | PRO-Kid | Canada | 2022 | To assess symptom burden in paediatric CKD/kidney failure. | 14 | 2 | Frequency; Impact | Yes | Jawa NA, Rapoport A, Widger K, Zappitelli M, Davison SN, Jha S, Dart AB, Matsuda-Abedini M. Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid). Pediatr Nephrol. 2022. Matsuda-Abedini M, Zappitelli M, Widger K, Rapoport A, Dionne JM, Chanchlani R, Samuel S, Davison SN, Bei KF, Lai VK, Dufault B. Validation of Patient-Reported Outcome measure in pediatric chronic Kidney disease (PRO-Kid). Clinical Journal of the American Society of Nephrology. 2024 Jan 24:10-2215. Jun;37(6):1377-1386. doi: 10.1007/s00467-021-05269-4. Epub 2021 Nov 10. PMID: 34761300; PMCID: PMC8579900. |
No information | Unknown | L. Brubaker, Departments of OG and Urology, Loyola University Chicago, Stritch School of Medicine, 2160 South First Avenue, Maywood, Chicago, IL, 60153, USA | Nil | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | Renal failure | SONG-HD Fatigue Scale | SONG-HD Fatigue | Australia | 2020 | To assess fatigue in patients receiving haemodialysis. | 3 | No specific domains/dimensions identified | Yes | Ju A, Teixeira-Pinto A, Tong A, Smith AC, Unruh M, Davison SN, Dapueto J, Dew MA, Fluck R, Germain MJ, Jassal SV. Validation of a core patient-reported outcome measure for fatigue in patients receiving hemodialysis: the SONG-HD fatigue instrument. Clinical Journal of the American Society of Nephrology. 2020 Nov 1;15(11):1614-21. | No information | Unknown | Dr. Angela Ju, Quality of Life Office, Level 6 North, Chris O’Brien Lifehouse C39Z, University of Sydney, NSW 2006, Australia. Email: angela.ju@ sydney.edu.au |
Nil | None identified in March 2025 | None identified in March 2025 | |
| Kidney and urinary | Urinary calculi | Urinary Stones and Intervention Quality of Life | USIQoL | UK | 2022 | To assess the health-related quality of life impact of urinary calculi and treatments. | 15 | 3 | Pain with physical health; Psychosocial health; Work performance | Yes | Joshi HB, Johnson H, Pietropaolo A, Raja A, Joyce AD, Somani B, Philip J, Biyani CS, Pickles T. Urinary Stones and Intervention Quality of Life (USIQoL): Development and Validation of a New Core Universal Patient-reported Outcome Measure for Urinary Calculi. Eur Urol Focus. 2022 Jan;8(1):283-290 | No information | Unknown | Hrishikesh B. Joshi, School of Medicine, Cardiff University, Cardiff, UK | Nil | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | Urinary incontinence | ICIQ-Male Lower Urinary Tract Symptoms | ICIQ-MLUTS | UK | 1996 | To evaluate male lower urinary tract symptoms and impact on quality of life. | 11 | 2 | Voiding; Incontinent symptoms | Yes | Donovan J, Abrams P, Peters T, Kay H, Reynard J, Chapple C, de la Rosette J, Kondo A. The ICS-'BPH' study: the psychometric validity and reliability of the ICSmale questionnaire. BJU. 1996; 77:554-562. | Yes | Unknown | mkamm@unimelb.edu.au | Nil | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | Urinary incontinence | Incontinence Impact Questionnaire | IIQ | USA | 1994 | To measure the impact of urinary incontinence on activities, roles, and emotional states in women. | 30 | 4 | Physical activity; Travel; Social relationships; Emotional health | Yes | Shumaker SA, Wyman JF, Uebersax JS, McClish D, Fantl JA, Continence Program in Women (CPW) Research Group. Health-related quality of life measures for women with urinary incontinence: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Quality of life Research. 1994 Oct;3:291-306. Corcos J, Behlouli H, Beaulieu S. Identifying cut-off scores with the neural networks for interpretation of the Incontinence Impact Questionnaire. Neuro and Urodyn. 2002;21:198-203. Uebersax JS, Wyman JF, Shumaker SA, McClish DK. Short forms to assess life quality and symptom distress for urinary incontinence in women: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Neurourology and urodynamics. 1995;14(2):131-9. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/incontinence-impact-questio… | https://link.springer.com/article/10.1007/BF00451721 | Yes | Symonds T. A review of condition-specific instruments to assess the impact of urinary incontinence on health-related quality of life. European urology. 2003 Mar 1;43(3):219-25. Matza LS, Zyczynski TM, Bavendam T. A review of quality-of-life questionnaires for urinary incontinence and overactive bladder: which ones to use and why?. Current Urology Reports. 2004 Sep;5(5):336-42. Avery KN, Bosch JL, Gotoh M, Naughton M, Jackson S, Radley SC, Valiquette L, Batista J, Donovan JL. Questionnaires to assess urinary and anal incontinence: review and recommendations. The Journal of urology. 2007 Jan 1;177(1):39-49. |
| Kidney and urinary | Urinary incontinence | Incontinence Impact Questionnaire-Short Form | IIQ-7 | USA | 1995 | To assess the impact of incontinence on various activities. | 7 | 4 | Physical activity; Travel; Social relationships; Emotional health | Yes | Uebersax JS, Wyman JF, Shumaker SA, McClish DK. Short forms to assess life quality and symptom distress for urinary incontinence in women: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Neurourology and urodynamics. 1995;14(2):131-9. | Yes | Unknown | https://john-uebersax.com/; https://eprovide.mapi-trust.org/instruments/incontinence-impact-questio… | Nil | Yes | Loganathan J, Coffey J, Doumouchtsis SK, CHORUS: An International Collaboration for Harmonising Outcomes, Research and Standards in Urogynaecology and Women’s Health. Which patient reported outcomes (PROs) and patient reported outcome measures (PROMs) do researchers select in stress urinary incontinence surgical trials?–a systematic review. International Urogynecology Journal. 2022 Nov;33(11):2941-9. |
| Kidney and urinary | Urinary incontinence | Incontinence Quality of Life Index | IQoLI | UK | 1997 | To assess quality of life in patients with urge incontinence. | 25 | No specific domains/dimensions identified | Yes | McKenna SP, Williamson T, Renck-Hooper U, Whalley D. The Development of UK and Canadian English Versions of the Incontinence Quality of Life Index (IQoLI). Journal of Outcomes Research, 1997;1:9-16. | Yes | Unknown | https://www.galen-research.com/measures-database/ | Nil | Yes | Symonds T. A review of condition-specific instruments to assess the impact of urinary incontinence on health-related quality of life. European urology. 2003 Mar 1;43(3):219-25. Ross S, Soroka D, Karahalios A, Glazener CM, Hay-Smith EJ, Drutz HP. Incontinence-specific quality of life measures used in trials of treatments for female urinary incontinence: a systematic review. International Urogynecology Journal. 2006 May;17:272-85. |
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| Kidney and urinary | Urinary incontinence | Incontinence Stress Index/Incontinence Stress Questionnaire for Patients | ISI, ISQ-P | USA | 1989 | To assess psychological stress associated with urinary incontinence. | 20 | 3 | Depression; Aesthetic/somatic; Social functioning | Yes | Yu LC, Kaltreider DL, Hu TW, Igou JF, Craighead WE. The ISQ-P tool measuring stress associated with incontinence. Journal of Gerontological Nursing. 1989 Feb 1;15(2):9-. Yu LC, Johnson K, Kaltreider DL, Hu TW, Brannon D, Ory M. Urinary incontinence: nursing home staff reaction toward residents. J Gerontol Nurs 1991;17:34-41. |
Yes | Unknown | Lucy Yu, Department of Nursing, The Pennsylvania State University, University Park, Pennsylvania 16802, U.S.A. | Nil | Yes | Matza LS, Zyczynski TM, Bavendam T. A review of quality-of-life questionnaires for urinary incontinence and overactive bladder: which ones to use and why?. Current Urology Reports. 2004 Sep;5(5):336-42. |
| Kidney and urinary | Urinary incontinence | International Consultation on Incontinence Questionnaire Female Lower Urinary Tract Symptoms Modules | ICIQ-FLUTS | UK | 2004 | To characterise symptom severity, impact on quality of life and evaluate treatment outcome. | 19 | 5 | Incontinence; Voiding; Filling; Sexual function; Quality of life | Yes | Brookes ST, Donovan JL, Wright M, Jackson S, Abrams P. A scored form of the Bristol Female Lower Urinary Tract Symptoms questionnaire: data from a randomized controlled trial of surgery for women with stress incontinence. Am J Obstet Gynecol. 2004 Jul;191(1):73-82. | Yes | Unknown | https://iciq.net/iciq-fluts | Nil | None identified in March 2025 | None identified in March 2025 |
| Kidney and urinary | Urinary incontinence | International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form | ICIQ-UI SF | UK | 2004 | To assess the symptoms and impact of urinary incontinence in clinical practice and research. | 4 | No specific domains/dimensions identified | Yes | Avery K, Donovan J, Peters T, Shaw C, Gotoh M, Abrams P. The ICIQ: a brief and robust measure for evaluating the symptoms and impact of urinary incontinence. Neurourol Urodyn. 2004; 23(4):322-30. | Yes | Unknown | https://iciq.net/iciq-ui-sf | Nil | Yes | O'Byrne LJ, Bodunde EO, Maher GM, Khashan AS, Greene RM, Browne JP, McCarthy FP. Patient-reported outcome measures evaluating postpartum maternal health and well-being: a systematic review and evaluation of measurement properties. American Journal of Obstetrics & Gynecology MFM. 2022 Nov 1;4(6):100743. | |
| Kidney and urinary | Urinary incontinence | Surgical Satisfaction Questionnaire | SSQ-8 | USA | 2011 | To assess patient satisfaction following surgery to correct urinary incontinence and/or pelvic organ prolapse. | 8 | No specific domains/dimensions identified | Yes | Haff RE, Stoltzfus J, Lucente VR, Murphy M. The surgical satisfaction questionnaire (SSQ-8): a validated tool for assessment of patient satisfaction following surgery to correct prolapse and/or incontinence. Journal of Minimally Invasive Gynecology. 2011 Nov 1;18(6):S49-50. |
No information | Unknown | R. E. Haff, Research, St. Luke's Hospital, Bethlehem, Pennsylvania | https://www.jmig.org/article/S1553-4650(11)00606-6/fulltext | None identified in March 2025 | None identified in March 2025 | |
| Kidney and urinary | Urinary incontinence | Urinary Incontinence-Specific Quality of Life | I-QOL | USA | 1996 | To assess quality of life of women and men with urinary incontinence. | 22 | 3 | Avoidance and limiting behaviour; Psychosocial impacts; Social embarrassment | Yes | Wagner TH, Patrick DL, Bavendam TG, Martin ML, Buesching DP. Quality of life of persons with urinary incontinence: development of a new measure. Urology 1996 Jan;47(1):67-71; discussion 71-2 | Yes | Yes, fees may apply | https://depts.washington.edu/seaqol/IQOL | Nil | Yes | Symonds T. A review of condition-specific instruments to assess the impact of urinary incontinence on health-related quality of life. European urology. 2003 Mar 1;43(3):219-25. Ross S, Soroka D, Karahalios A, Glazener CM, Hay-Smith EJ, Drutz HP. Incontinence-specific quality of life measures used in trials of treatments for female urinary incontinence: a systematic review. International Urogynecology Journal. 2006 May;17:272-85. |
| Mental health | Addiction, general | Response to Addiction Recovery | R2AR | USA | 2023 | To assess addiction recovery. | 19 | 8 | Meaning and purpose; Psychological well-being; Environment/housing/safety; Social support; Coping and life functioning; Recovery experience/risk taking; Health, citizenship and community involvement | Yes | Okrant E, Reif S, Horgan CM. Development of an addiction recovery patient-reported outcome measure: Response to Addiction Recovery (R2AR). Subst Abuse Treat Prev Policy. 2023 Sep 1;18(1):52. doi: 10.1186/s13011-023-00560-z. PMID: 37658373; PMCID: PMC10474628. | No information | Sharon Reif,reif@brandeis.edu, Institute for Behavioral Health, Schneider Institutes for Health Policy and Research, Heller School for Social Policy and Management, Brandeis University, MS035, 415 South Street, Waltham, MA 02453, USA | Nil | None identified in March 2025 | None identified in March 2025 | |
| Mental health | Alcohol use disorders | Alcohol Use Disorders Identification Test | AUDIT | Australia | 1993 | To assess hazardous and harmful alcohol consumption and screen for problem drinking which is at an earlier or milder stage. | 10 | 3 | Alcohol intake; Potential dependence on alcohol; Experience of alcohol-related harm | Yes | Saunders JB, Aasland OG, Babor TF, De la Fuente JR, Grant M. Development of the alcohol use disorders identification test (AUDIT): WHO collaborative project on early detection of persons with harmful alcohol consumption‐II. Addiction. 1993 Jun;88(6):791-804. | PubliclYes available | Unknown | https://auditscreen.org/ | Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Alcohol use disorders | Alcohol Use Disorders Identification Test-Concise | AUDIT-C | USA | 1998 | To screen heavy drinking and/or active alcohol abuse or dependence. | 3 | No specific domains/dimensions identified | Yes | Bush K, Kivlahan DR, McDonell MB, Fihn SD, Bradley KA. The AUDIT alcohol consumption questions (AUDIT-C): an effective brief screening test for problem drinking. Ambulatory Care Quality Improvement Project (ACQUIP). Alcohol Use Disorders Identification Test. Arch Intern Med. 1998 Sep 14;158(16):1789-95 | PubliclYes available | Unknown | https://cde.nida.nih.gov/instrument/f229c68a-67ce-9a58-e040-bb89ad432be4 | Yes | Santos GM, Strathdee SA, El-Bassel N, Patel P, Subramanian D, Horyniak D, Cook RR, McCullagh C, Marotta P, Choksi F, Kang B. Psychometric properties of measures of substance use: a systematic review and meta-analysis of reliability, validity and diagnostic test accuracy. BMC medical research methodology. 2020 Dec;20:1-22. | ||
| Mental health | Alcohol use disorders | Michigan Alcoholism Screening Test | MAST | USA | 1971 | To detect alcohol dependence. | 25 | No specific domains/dimensions identified | Yes | Selzer ML. The Michigan Alcoholism Screening Test: The quest for a new diagnostic instrument. American journal of Psychiatry. 1971 Jun;127(12):1653-8. Selzer ML, Vinokur A, van Rooijen L. A self-administered short Michigan alcoholism screening test (SMAST). Journal of studies on alcohol. 1975 Jan;36(1):117-26. Minnich A, Erford BT, Bardhoshi G, Atalay Z, Chang CY, Muller LA. Systematic evaluation of psychometric characteristics of the Michigan alcoholism screening test 13‐item short (SMAST) and 10‐item brief (BMAST) versions. Journal of Counseling & Development. 2019 Jan;97(1):15-24. |
No information | Unknown | https://www.parinc.com/Portals/0/Webuploads/samplerpts/ChecKIT%20Series… | Nil | None identified in March 2025 | None identified in March 2025 | |
| Mental health | Alcohol use disorders | Penn Alcohol Craving Scale | PACS | USA | 1999 | To assess the frequency, intensity, and duration of craving alcohol. | 5 | No specific domains/dimensions identified | Yes | Flannery BA, Volpicelli JR, Pettinati H. Psychometric properties of the Penn alcohol craving scale. Alcoholism: Clinical and Experimental Research. 1999 Aug;23(8):1289-95. | Yes | Unknown | Copyright information: PACS© Research Society on Alcoholism 1999; email: rrogers@salud.unm.edu | Nil | None identified in March 2025 | None identified in March 2025 | |
| Mental health | Anxiety | Zung Self-Rating Anxiety Scale | SAS, ZSAS | USA | 1971 | To evaluate and record the presence of anxiety | 20 | No specific domains/dimensions identified | Yes | Zung WW. A rating instrument for anxiety disorders. Psychosomatics: Journal of Consultation and Liaison Psychiatry. 1971 Nov. Dunstan DA, Scott N, Todd AK. Screening for anxiety and depression: reassessing the utility of the Zung scales. BMC psychiatry. 2017 Dec;17:1-8. |
Publicly available | Unknown | https://loricalabresemd.com/wp-content/uploads/2017/12/zung-anxiety-scale.pdf | None identified in March 2025 | None identified in March 2025 | ||
| Mental health | Anxiety | Beck Anxiety Inventory | BAI | USA | 1988 | To measure the severity of anxiety in psychiatric populations. | 21 | 21 | Common symptoms of anxiety | Yes | Beck AT, Epstein N, Brown G, Steer RA. An inventory for measuring clinical anxiety: psychometric properties. Journal of consulting and clinical psychology. 1988 Dec;56(6):893. | Yes | Unknown | https://www.pearsonassessments.com/store/usassessments/en/Store/Profess… | Nil | Yes | Velescu, D. R., Marc, M. S., Traila, D., Pescaru, C. C., Hogea, P., Suppini, N., ... & Oancea, C. A Narrative Review of Self-Reported Scales to Evaluate Depression and Anxiety Symptoms in Adult Obstructive Sleep Apnea Patients. Medicina. 2024;60(2):261. |
| Mental health | Anxiety | Connor Davidson Resilience Scale | CD-RISC | USA | 2003 | To assess resilience, the ability to thrive in the face of adversity. | 25 | 5 | Personal competence; Trust; Positive acceptance; Control; Spiritual influence | Yes | Connor KM, Davidson JR. Development of a new resilience scale: the Connor- Davidson Resilience Scale (CD-RISC). Depress Anxiety. 2003;18(2):76-82 | Yes | Unknown | https://www.connordavidson-resiliencescale.com/ | Nil | Yes | Cosco TD, Kaushal A, Richards M, Kuh D, Stafford M. Resilience measurement in later life: a systematic review and psychometric analysis. Health and quality of life outcomes. 2016 Dec;14:1-6. Windle G, Bennett KM, Noyes J. A methodological review of resilience measurement scales. Health and quality of life outcomes. 2011 Dec;9:1-8. |
| Mental health | Anxiety | Parent Sensitivity to Child Anxiety Index | PSCAI | USA | 2018 | To assess parent’s sensitivity to their children’s anxiety symptoms. | 18 | 3 | Parents’ concern for physical symptoms; Concern of social evaluation; Fear of anxiety symptoms | Yes | Wissemann K, Gorday JY, Meyer A. The parent sensitivity to child anxiety index. Child Psychiatry & Human Development. 2018 Oct;49:814-21. | No information | Unknown | Karl Wissemann, Florida State University, Tallahassee, FL, USA | Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Anxiety | Parental Beliefs about Anxiety Questionnaire | PBA-Q | Canada | 2010 | To assess parental beliefs about their child’s anxiety. | 17 | 4 | Concern for the parent’s own feelings about their child’s anxiety; Potential consequences of the child’s anxiety; Logical thinking component; Being a good parent | Yes | Francis SE, Chorpita BF. Development and evaluation of the parental beliefs about anxiety questionnaire. Journal of Psychopathology and Behavioral Assessment. 2010 Mar;32:138-49. | No information | Unknown | Sarah E. Francis, Department of Psychology, Memorial University of Newfoundland, St. John’s, Newfoundland, Canada | Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Anxiety | Penn State Worry Questionnaire | PSWQ | USA | 1990 | To identify pathological worry in patients. | 16 | No specific domains/dimensions identified | Yes | Meyer TJ, Miller ML, Metzger RL, Borkovec TD. Development and validation of the Penn State Worry Questionnaire. Behav Res Ther. 1990;28(6):487-95 | PubliclYes available | Unknown | https://caleblack.com/psy5960_files/PSWQ.pdf | Yes | Balsamo M, Cataldi F, Carlucci L, Fairfield B. Assessment of anxiety in older adults: a review of self-report measures. Clinical interventions in aging. 2018 Apr 6:573-93. Breedvelt JJ, Zamperoni V, South E, Uphoff EP, Gilbody S, Bockting CL, Churchill R, Kousoulis AA. A systematic review of mental health measurement scales for evaluating the effects of mental health prevention interventions. European Journal of Public Health. 2020 Jun 1;30(3):510-6. |
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| Mental health | Anxiety | Short Health Anxiety Inventory | SHAI | UK | 2002 | To measure health anxiety. | 18 | 2 | Health anxiety; Negative consequences | Yes | Salkovskis PM, Rimes KA, Warwick HM, Clark DM. The Health Anxiety Inventory: development and validation of scales for the measurement of health anxiety and hypochondriasis. Psychol Med. 2002 Jul;32(5):843-53 | PubliclYes available | Unknown | https://novopsych.com.au/wp-content/uploads/2023/02/short-health-anxiety-inventory-assessment_pdf.pdf | None identified in March 2025 | None identified in March 2025 | |
| Mental health | Anxiety | Social Avoidance and Distress Scale | SADS | Canada | 1969 | To measure various aspects of social anxiety including distress, discomfort, fear, anxiety, and the avoidance of social situations. | 28 | No specific domains/dimensions identified | Yes | Watson D, Friend R. Measurement of social-evaluative anxiety. J Consult Clin Psychol. 1969 Aug;33(4):448-57 | PubliclYes available | Unknown | https://novopsych.com.au/wp-content/uploads/2023/02/sads_template.pdf | Yes | Modini M, Abbott MJ, Hunt C. A systematic review of the psychometric properties of trait social anxiety self-report measures. Journal of Psychopathology and Behavioral Assessment. 2015 Dec;37:645-62. | ||
| Mental health | Anxiety | State-Trait Anxiety Inventory For Adults | STAI-AD | USA | 1983 | To measure anxiety in adults through differentiating between the temporary condition of "state anxiety" and the more general and long-standing quality of "trait anxiety." | 40 | 2 | Trait anxiety; State anxiety | Yes | Ramanaiah NV, Franzen M, Schill T. A psychometric study of the State-Trait Anxiety Inventory. Journal of personality assessment. 1983 Oct 1;47(5):531-5. Spielberger CD. State-trait anxiety inventory (Form Y) manual. Palo Alto: Mind Garden. 1983. |
Yes | Yes, fees may apply | Copyright © 1968, 1977 by Charles D. Spielberger, State-Trait Anxiety Inventory for Adults™ is a trademark of Mind Garden, Inc., https://www.mindgarden.com/145-state-trait-anxiety-inventory-for-adults | Nil | Yes | James O'Carroll, Kazuo Ando, Romy Yun, Danielle Panelli, Angela Nicklin, Natasha Kennedy, Brendan Carvalho, Lindsay Blake, Jessica Coker, Debra Kaysen, Pervez Sultan. A systematic review of patient–reported outcome measures used in maternal postpartum anxiety, American Journal of Obstetrics & Gynecology MFM. 2023 Volume 5, Issue 9, 101076 |
| Mental health | Anxiety | State-Trait Anxiety Inventory for Children | STAI-CH | USA | 1973 | To distinguish between a general proneness to anxious behaviour rooted in the personality and anxiety as a fleeting emotional state. | 40 | 2 | State anxiety; Trait anxiety | Yes | Spielberger CD, Ph.D. in collaboration with Gorsuch RL, Lushene R, Vagg PR, Jacobs GA. State-Trait Anxiety Inventory™ for Children. Manual. 1973. | Yes | Yes, fees may apply | https://www.mindgarden.com/146-state-trait-anxiety-inventory-for-childr… | Nil | Yes | Eagleson KJ, McCombs D, Gerlich TM, Justo RN, Kasparian NA, Bora S. Systematic Review of Instruments Assessing Psychosocial Adaptation and Outcomes Among Families of Children With Congenital Heart Disease. J Pediatr Psychol. 2023 Jul 5;48(6):537-552 |
| Mental health | Anxiety disorders; Mood disorders; Depression; Mental retardation | Anxiety, Depression And Mood Scale | ADAMS | USA | 2003 | To assess symptoms of anxiety and depression among individuals with mental retardation. | 28 | 5 | Manic/Hyperactive Behaviour; Depressed Mood; Social Avoidance; General Anxiety; Compulsive Behaviour | Esbensen AJ, Rojahn J, Aman MG, Ruedrich S. Reliability and validity of an assessment instrument for anxiety, depression, and mood among individuals with mental retardation. Journal of autism and developmental disorders. 2003 Dec;33:617-29. Rojahn J, Rowe EW, Kasdan S, Moore L, van Ingen DJ. Psychometric properties of the aberrant behavior checklist, the anxiety, depression and mood scale, the assessment of dual diagnosis and the social performance survey schedule in adults with intellectual disabilities. Research in Developmental Disabilities. 2011 Nov 1;32(6):2309-20. |
PubliclYes available | Unknown | https://novopsych.com.au/assessments/disability/anxiety-depression-mood-scale-adams/ | Yes | Hermans, H., & Evenhuis, H. M. Characteristics of instruments screening for depression in adults with intellectual disabilities: Systematic review. Research in developmental disabilities. 2010;31(6):1109-1120. | ||
| Mental health | Anxiety, Depressopm | Hospital Anxiety And Depression Scale | HADS | UK | 1983 | To measure anxiety and depressive symptoms in a general medical population. | 14 | 2 | Anxiety; Depression | Yes | Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta psychiatrica scandinavica. 1983 Jun;67(6):361-70. Snaith RP. The hospital anxiety and depression scale. Health and quality of life outcomes. 2003 Dec;1:1-4. White D, Leach C, Sims R, Atkinson M, Cottrell D. Validation of the Hospital Anxiety and Depression Scale for use with adolescents. The British Journal of Psychiatry. 1999 Nov;175(5):452-4. |
Yes | Yes, fees may apply | https://eprovide.mapi-trust.org/instruments/hospital-anxiety-and-depres… | Nil | Yes | Sakakibara BM, Miller WC, Orenczuk SG, Wolfe DL. A systematic review of depression and anxiety measures used with individuals with spinal cord injury. Spinal cord. 2009 Dec;47(12):841-51. Breedvelt JJ, Zamperoni V, South E, Uphoff EP, Gilbody S, Bockting CL, Churchill R, Kousoulis AA. A systematic review of mental health measurement scales for evaluating the effects of mental health prevention interventions. European Journal of Public Health. 2020 Jun 1;30(3):510-6 |
| Mental health | Anxiety; Depression | Depression Anxiety Stress Scales | DASS | Australia | 1995 | To measure the negative emotional states of depression, anxiety and stress. | 42 | 3 | Depression; Anxiety; Stress | Yes | Lovibond PF, Lovibond SH. The structure of negative emotional states: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behaviour research and therapy. 1995 Mar 1;33(3):335-43. Brown TA, Chorpita BF, Korotitsch W, Barlow DH. Psychometric properties of the Depression Anxiety Stress Scales (DASS) in clinical samples. Behaviour research and therapy. 1997 Jan 1;35(1):79-89. Brown TA, Chorpita BF, Korotitsch W, Barlow DH. Psychometric properties of the Depression Anxiety Stress Scales (DASS) in clinical samples. Behaviour research and therapy. 1997 Jan 1;35(1):79-89. |
PubliclYes available | Unknown | https://www2.psy.unsw.edu.au/dass/ | Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Anxiety; Depression | Revised Child Anxiety And Depression Scale | RCADS | USA | 2000 | To assess symptoms of depression and anxiety in children and adolescents. | 47 | 6 | Separation anxiety disorder; Social phobia; Generalized anxiety disorder; Panic disorder; Obsessive compulsive disorder; Low mood (major depressive disorder) | Yes | Chorpita BF, Yim L, Moffitt C, Umemoto LA, Francis SE. Assessment of symptoms of DSM-IV anxiety and depression in children: A revised child anxiety and depression scale. Behaviour research and therapy. 2000 Aug 1;38(8):835-55. Chorpita BF, Moffitt CE, Gray J. Psychometric properties of the Revised Child Anxiety and Depression Scale in a clinical sample. Behaviour research and therapy. 2005 Mar 1;43(3):309-22. |
Yes | Unknown | Chorpita BF, Department of Psychology, University of Hawaii at Manoa, Honolulu 96822, USA. chorpita@hawaii.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Anxiety; Depression; Alcohol use | Patient Health Questionnaire | PHQ | USA | 1999 | To diagnose mental disorders in primary care. | 11 | 5 | Depression; Anxiety; Somatoform; Alcohol; Eating | Yes | Spitzer RL, Kroenke K, Williams JB, Patient Health Questionnaire Primary Care Study Group, Patient Health Questionnaire Primary Care Study Group. Validation and utility of a self-report version of PRIME-MD: the PHQ primary care study. Jama. 1999 Nov 10;282(18):1737-44. Kroenke K, Spitzer RL, Williams JB. The PHQ‐9: validity of a brief depression severity measure. Journal of general internal medicine. 2001 Sep;16(9):606-13. Kroenke K, Spitzer RL, Williams JB. The PHQ-15: validity of a new measure for evaluating the severity of somatic symptoms. Psychosomatic medicine. 2002 Mar 1;64(2):258-66. |
Yes | Unknown | https://www.phqscreeners.com/ | Nil | Yes | Sitnikova K, Dijkstra-Kersten SM, Mokkink LB, Terluin B, van Marwijk HW, Leone SS, van der Horst HE, van der Wouden JC. Systematic review of measurement properties of questionnaires measuring somatization in primary care patients. Journal of psychosomatic research. 2017 Dec 1;103:42-62. van Dijk SE, Adriaanse MC, van der Zwaan L, Bosmans JE, van Marwijk HW, van Tulder MW, Terwee CB. Measurement properties of depression questionnaires in patients with diabetes: a systematic review. Quality of Life Research. 2018 Jun;27:1415-30. |
| Mental health | Depression | Zung Self-Rating Depression Scale | SDS, ZSDS | USA | 1965 | To assess adult depression severity. | 20 | No specific domains/dimensions identified | Yes | Zung WW. A self-rating depression scale. Archives of general psychiatry. 1965 Jan 1;12(1):63-70. | Publicly available | Unknown | https://integrationacademy.ahrq.gov/sites/default/files/2020-07/Zung_Self_Rating_Depression_Scale.pdf | Yes | Balsamo M, Cataldi F, Carlucci L, Padulo C, Fairfield B. Assessment of late-life depression via self-report measures: a review. Clinical interventions in aging. 2018 Oct 16:2021-44. Velescu DR, Marc MS, Traila D, Pescaru CC, Hogea P, Suppini N, Crisan AF, Wellmann N, Oancea C. A Narrative Review of Self-Reported Scales to Evaluate Depression and Anxiety Symptoms in Adult Obstructive Sleep Apnea Patients. Medicina. 2024 Feb 2;60(2):261. |
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| Mental health | Depression | Beck Depression Inventory | BDI | USA | 1996 | To measure the severity of depression in adults and adolescents. | 21 | 2 | Somatic affective; Cognitive | Yes | Beck AT, Steer RA, Brown GK. BDI®-II Manual.The Psychological Corporation, San Antonio, TX, USA. 1996; 38p Steer RA, Ball R, Ranieri WF, Beck AT. Dimensions of the Beck Depression Inventory‐II in clinically depressed outpatients. Journal of clinical psychology. 1999 Jan;55(1):117-28. |
Yes | Unknown | https://www.nctsn.org/measures/beck-depression-inventory-second-edition | Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Depression | Beck Hopelessness Scale | BHS | USA | 1988 | To quantify hopelessness or negative expectations about the future. | 20 | No specific domains/dimensions identified | Yes | Beck AT, Steer RA. Manual for the Beck hopelessness scale. San Antonio, TX: Psychological Corporation. 1988. | Yes | Yes, fees may apply | https://www.pearsonassessments.com/store/usassessments/en/Store/Profess… | Nil | Yes | Golomb BA, Vickrey BG, Hays RD. A review of health-related quality-of-life measures in stroke. Pharmacoeconomics. 2001 Feb;19:155-85. Jahani Sayad Noveiri M, Shamsaei F, Khodaveisi M, Vanaki Z, Tapak L. Coping assessment tools in the family caregivers of patients with breast cancer: A systematic review. Breast Cancer: Targets and Therapy. 2020 Feb 5:11-26. Orth Z, van Wyk B. Measuring mental wellness among adolescents living with a physical chronic condition: a systematic review of the mental health and mental well-being instruments. BMC psychology. 2021 Dec;9:1-7. |
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| Mental health | Depression | Center For Epidemiological Studies Depression Scale | CES-D | USA | 1971 | To assess the frequency and severity with which symptoms of depression are experienced in the general population. | 20 | 4 | Depressed affect; Somatic complaints; Positive affect; Interpersonal activity | Yes | Center for Epidemiologic Studies, National Institute of Mental Health. Center for Epidemiologic Studies Depression Scale (CES-D). Rockville, MD: National Institute of Mental Health, 1971. Hann D, Winter K, Jacobsen P. Measurement of depressive symptoms in cancer patients: evaluation of the Center for Epidemiological Studies Depression Scale (CES-D). Journal of psychosomatic research. 1999 May 1;46(5):437-43. Radloff LS. Scale: A self-report depression scale for research in the general population. J Clin Exp Neuropsychol. 1997;19:340-56. |
PubliclYes available | Unknown | Center for Epidemiologic Studies from the National Institute of Mental Health; https://eprovide.mapi-trust.org/instruments/center-for-epidemiologic-st… | https://www.apa.org/depression-guideline/epidemiologic-studies-scale.pdf | Yes | Balsamo M, Cataldi F, Carlucci L, Padulo C, Fairfield B. Assessment of late-life depression via self-report measures: a review. Clinical interventions in aging. 2018 Oct 16:2021-44. van Dijk SE, Adriaanse MC, van der Zwaan L, Bosmans JE, van Marwijk HW, van Tulder MW, Terwee CB. Measurement properties of depression questionnaires in patients with diabetes: a systematic review. Quality of Life Research. 2018 Jun;27:1415-30. Carnevale T. An integrative review of adolescent depression screening instruments: Applicability for use by school nurses. Journal of Child and Adolescent Psychiatric Nursing. 2011 Feb;24(1):51-7. |
| Mental health | Depression | Center for Epidemiological Studies Depression Scale for Children | CES-DC | USA | 1986 | To assess the frequency and severity with which symptoms of depression are experienced in children. | 20 | 3 | Behavioural; Cognitive; Happiness | Yes | Faulstich ME, Carey MP, Ruggiero L, Enyart P, Gresham F. Assessment of depression in childhood and adolescence: an evaluation of the Center for Epidemiological Studies Depression Scale for Children (CES-DC). Am J Psychiatry. 1986 Aug;143(8):1024-7 | PubliclYes available | Unknown | https://greenspacehealth.com/en-us/child-depression-ces-dc/ | None identified in March 2025 | None identified in March 2025 | |
| Mental health | Depression | Center for Epidemiological Studies Depression Scale Revised | CESD-R | USA | 2004 | To assess the frequency and severity with which symptoms of depression are experienced in the general population. | 20 | 9 | Sadness(Dysphoria); Loss of Interest(Anhedonia); Appetite; Sleep; Thinking / concentration; Guilt; Tired(fatigue); Movement(Agitation); Suicidal ideation | Yes | Center for Epidemiologic Studies, National Institute of Mental Health. Center for Epidemiologic Studies Depression Scale (CES-D). Rockville, MD: National Institute of Mental Health, 1971. Eaton WW, Muntaner C, Smith C, Tien A, Ybarra M, Maruish ME. Center for epidemiologic studies depression scale: Review and revision. The use of psychological testing for treatment planning and outcomes assessment. 2004:p363-77. |
PubliclYes available | Unknown | https://cesd-r.com/ | https://cesd-r.com/download/ | Yes | Nabbe P, Le Reste JY, Guillou-Landreat M, Perez MM, Argyriadou S, Claveria A, San Martín MF, Czachowski S, Lingner H, Lygidakis C, Sowinska A. Which DSM validated tools for diagnosing depression are usable in primary care research? A systematic literature review. European Psychiatry. 2017 Jan;39:99-105. |
| Mental health | Depression | Center for Epidemiological Studies Depression Scale-10 | CESD-10 | USA | 1994 | To assess the frequency and severity with which symptoms of depression are experienced in well older adults. | 10 | 3 | Depressed affect; Somatic retardation; Positive affect | Yes | Andresen EM, Malmgren JA, Carter WB, Patrick DL. Screening for depression in well older adults: evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale). Am J Prev Med. 1994 Mar-Apr;10(2):77-84. Mohebbi M, Nguyen V, McNeil JJ, Woods RL, Nelson MR, Shah RC, Storey E, Murray AM, Reid CM, Kirpach B, Wolfe R. Psychometric properties of a short form of the Center for Epidemiologic Studies Depression (CES-D-10) scale for screening depressive symptoms in healthy community dwelling older adults. General hospital psychiatry. 2018 Mar 1;51:118-25. |
PubliclYes available | Unknown | https://www.brandeis.edu/roybal/docs/CESD-10_website_PDF.pdf | Yes | Hind D, Kaklamanou D, Beever D, Webster R, Lee E, Barkham M, Cooper C. The assessment of depression in people with multiple sclerosis: a systematic review of psychometric validation studies. BMC psychiatry. 2016 Dec;16:1-8. | |
| Mental health | Depression | Depression And Family Functioning Scale | DFFS | USA | 2016 | To assess the impact of major depressive disorder (MDD) on family functioning. | 15 | 4 | Emotional closeness; Role responsibilities; Communication; Stress | Yes | Williams V, Francois C, Danchenko N, Nelson L, Williams N, Yarr S, DiBenedetti D, Lancon C. Psychometric validation of the depression and family functioning scale. Current medical research and opinion. 2016 Apr 2;32(4):639-50. | No information | Unknown | Valerie Williams, RTI Health Solutions, Research Triangle Park, NC, USA; vwilliams@rti.org | Nil | ||
| Mental health | Depression | Dimensional Anhedonia Rating Scale | DARS | Canada | 2015 | To assess anhedonia, a core symptom of Major Depressive Disorder. | 17 | 4 | Hobbies; Foods/drinks; Social activities; Sensory experience | Yes | Rizvi SJ, Quilty LC, Sproule BA, Cyriac A, Michael Bagby R, Kennedy SH. Development and validation of the Dimensional Anhedonia Rating Scale (DARS) in a community sample and individuals with major depression. Psychiatry Res. 2015 Sep 30;229(1-2):109-19. doi: 10.1016/j.psychres.2015.07.062. Epub 2015 Jul 26. PMID: 26250147. | Yes | Unknown | Sakina J. Rizvi, Department of Psychiatry, University Health Network, Toronto, Ontario, Canada | Nil | Yes | McIntyre RS, Ismail Z, Watling CP, Weiss C, Meehan SR, Musingarimi P, Thase ME. Patient-reported outcome measures for life engagement in mental health: a systematic review. Journal of patient-reported outcomes. 2022 Jun 10;6(1):62. |
| Mental health | Depression | Fatigue Associated With Depression Questionnaire | FAsD | USA | 2011 | To assess fatigue associated with depression. | 13 | 2 | Experience; Impact | Yes | Matza LS, Phillips GA, Revicki DA, Murray L, Malley KG. Development and validation of a patient-report measure of fatigue associated with depression. Journal of Affective Disorders. 2011 Nov 1;134(1-3):294-303. | No information | Unknown | Louis S. Matza, Center for Health Outcomes Research, United BioSource Corporation, Bethesda, MD, United States, 7101 Wisconsin Avenue, Suite 600, Bethesda, MD 20814, Tel.: + 1 301 664 7263; fax: + 1 301 654 9864, louis.matza@unitedbiosource.com | Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Depression | Geriatric Depression Scale | GDS | USA | 1982 | To measure depression in older adults. | 15 | No specific domains/dimensions identified | Yes | Yesavage JA, Brink TL, Rose TL, Lum O, Huang V, Adey M, Leirer VO. Development and validation of a geriatric depression screening scale: a preliminary report. Journal of psychiatric research. 1982 Jan 1;17(1):37-49. | PubliclYes available | Unknown | https://geriatrictoolkit.missouri.edu/cog/GDS_SHORT_FORM.PDF | Nil | None identified in March 2025 | None identified in March 2025 | |
| Mental health | Depression | Hopkins Symptom Checklist | HSCL-25 | USA | 1984 | To measure symptoms of anxiety and depression. | 25 | 2 | Anxiety; Depression | Yes | Winokur A, Winokur DF, Rickels K, Cox DS. Symptoms of emotional distress in a family planning service: stability over a four-week period. The British Journal of Psychiatry. 1984 Apr;144(4):395-9. https://doi.org/10.1207/s15327752jpa4705_14 Spielberger, C. D. (1983). State-Trait Anxiety Inventory (Form Y) Manual. Palo Alto. CA: Mind Garden. |
No information | Unknown | Andrew Winokur, Depression Research Unit, Department of Psychiatry, School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA | Nil | Yes | Sultan P, Ando K, Elkhateb R, George RB, Lim G, Carvalho B, Chitneni A, Kawai R, Tulipan T, Blake L, Coker J. Assessment of patient-reported outcome measures for maternal postpartum depression using the consensus-based standards for the selection of health measurement instruments guideline: a systematic review. JAMA Network Open. 2022 Jun 1;5(6):e2214885-. |
| Mental health | Depression | Inventory of Depressive Symptomatology Self-Report | IDS-SR | USA | 1996 | To assess depressive symptom severity. | 30 | 3 | Cognitive/mood; Anxiety/arousal; Vegetative | Yes | Rush AJ, Carmody T, Reimitz PE. The Inventory of Depressive Symptomatology (IDS): clinician (IDS‐C) and self‐report (IDS‐SR) ratings of depressive symptoms. International journal of methods in psychiatric research. 2000 Jun;9(2):45-59. Rush AJ, Gullion CM, Basco MR, Jarrett RB, Trivedi MH. The inventory of depressive symptomatology (IDS): psychometric properties. Psychological medicine. 1996 May;26(3):477-86. |
Yes | Unknown | John Rush, curbstoneconsultant@gmail.com; https://eprovide.mapi-trust.org/instruments/inventory-of-depressive-sym… | Nil | Yes | Baandrup L, Rasmussen JØ, Mainz J, Videbech P, Kristensen S. Patient-reported outcome measures in mental health clinical research: a descriptive review in comparison with clinician-rated outcome measures. International Journal for Quality in Health Care. 2022 Apr 1;34(Supplement_1):ii70-97. |
| Mental health | Depression | Manchester Short Assessment of Quality of Life | MANSA | UK | 1999 | To assess quality of life focusing on satisfaction with life as a whole and with life domains. | 25 | 2 | Satisfaction with life and health-related aspects of quality of life; Satisfaction with living environment | Yes | Priebe S, Huxley P, Knight S, Evans S. Application and results of the Manchester Short Assessment of Quality of Life (MANSA). Int J Soc Psychiatry. 1999 Spring;45(1):7-12 | PubliclYes available | Unknown | https://m3ewb.research.uconn.edu/wp-content/uploads/sites/3234/2022/10/MANSA.pdf | Yes | Tyler E, Lobban F, Hadarag MB, Jones S. A systematic review of psychosocial functioning and quality of life in older people with bipolar disorder. Journal of Affective Disorders Reports. 2022 Jul 1;9:100371. Karow A, Wittmann L, Schöttle D, Schäfer I, Lambert M. The assessment of quality of life in clinical practice in patients with schizophrenia. Dialogues in clinical neuroscience. 2014 Jun 30;16(2):185-95. |
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| Mental health | Depression | Mood And Anxiety Symptoms Questionnaire | MASQ | USA | 1991 | To assess depression and anxiety symptoms. | 90 | 6 | Non-specific symptoms; Anxious Arousal; Loss of Interest; High Positive Affect | Yes | Watson D, Clark LA. Mood and anxiety symptom questionnaire. Journal of Behavior Therapy and Experimental Psychiatry. 1991. Watson D, Weber K, Assenheimer JS, Clark LA, Strauss ME, McCormick RA. Testing a tripartite model: I. Evaluating the convergent and discriminant validity of anxiety and depression symptom scales. Journal of abnormal psychology. 1995 Feb;104(1):3. Wardenaar KJ, van Veen T, Giltay EJ, de Beurs E, Penninx BW, Zitman FG. Development and validation of a 30-item short adaptation of the Mood and Anxiety Symptoms Questionnaire (MASQ). Psychiatry research. 2010 Aug 30;179(1):101-6. |
Yes | Unknown | Clark LA, Watson D., Department of Psychology, Southern Methodist University, Dallas, Texas 75275-0442. | Nil | Yes | Jordan, A., Eccleston, C., & Crombez, G. (2008). Parental functioning in the context of adolescent chronic pain: a review of previously used measures. Journal of pediatric psychology. 2008;33(6: 640-659. |
| Mental health | Depression | Mood and Feelings Questionnaire | MFQ | USA | 1988 | To measure core depressive symptomology in children and adolescents aged 8-16 years old. | 33 | No specific domains/dimensions identified | Yes | Costello EJ & Angold A. Scales to assess child and adolescent depression: Checklists, screens, and nets. Journal of the American Academy of Child & Adolescent Psychiatry, 1988, 27(6), 726–737. Kent L, Vostanis P, Feehan C. Detection of major and minor depression in children and adolescents: evaluation of the Mood and Feelings Questionnaire. Journal of Child Psychology and Psychiatry. 1997 Jul;38(5):565-73. |
PubliclYes available | Unknown | https://psychiatry.duke.edu/research/research-programs-areas/assessment-intervention/developmental-epidemiology-instruments-0 | None identified in March 2025 | None identified in March 2025 | ||
| Mental health | Depression | Patient Health Questionnaire-2 | PHQ-2 | USA | 2003 | To screen for depression. | 2 | No specific domains/dimensions identified | Yes | Kroenke K, Spitzer RL, Williams JB. The Patient Health Questionnaire-2: validity of a two-item depression screener. Med Care. 2003 Nov;41(11):1284-92 | PubliclYes available | Unknown | https://aidsetc.org/sites/default/files/resources_files/PHQ-2_English.pdf | None identified in March 2025 | None identified in March 2025 | ||
| Mental health | Depression | Reynolds Adolescent Depression Scale, Second Edition | RADS-2 | USA | 2002 | To measure depressive symptoms in adolescents. | 30 | 4 | Dysphoric mood; Anhedonia/negative affect; Negative self-evaluation; Somatic complaints | Yes | Reynolds WM. Reynolds Adolescent Depression Scale–2nd Edition (RADS-2): Professional Manual. PAR. 2002 Reynolds WM. Reynolds Adolescent Depression Scale. Professional manual. Odessa: Psychological Assessment Resources, Inc; 1987 |
Yes | Unknown | https://www.parinc.com/products/RADS-2#:~:text=This%2030%2Ditem%20self%…. | Nil | Yes | Carnevale T. An integrative review of adolescent depression screening instruments: Applicability for use by school nurses. Journal of Child and Adolescent Psychiatric Nursing. 2011 Feb;24(1):51-7. |
| Mental health | Depression | Symptoms of Major Depressive Disorder Scale | SMDDS | USA | 2019 | To assess patient-reported symptoms associated with major depressive disorder in patients 18 years or older. | 35 | No specific domains/dimensions identified | Yes | McCarrier KP, Deal LS, Abraham L, Blum SI, Bush EN, Martin ML, Thase ME, Coons SJ on behalf of the Patient-Reported Outcome Consortium’s Depression Working Group. Patient-Centered Research to Support the Development of the Symptoms of Major Depressive Disorder Scale (SMDDS): Initial Qualitative Research. The Patient. 2016 Apr;9(2):117-34. Bushnell DM, McCarrier KP, Bush EN, Abraham L, Jamieson C, McDougall F, Trivedi MH, Thase ME, Carpenter L, Coons SJ, PRO Consortium's Depression Working Group. Symptoms of major depressive disorder scale: performance of a novel patient-reported symptom measure. Value in Health. 2019 Aug 1;22(8):906-15. |
Yes | Unknown | https://c-path.org/c-path-receives-coa-qualification-from-fda-for-the-s… | Nil | None identified in March 2025 | None identified in March 2025 | |
| Mental health | Generalised Anxiety Disorder | Generalized Anxiety Disorder Scale | GAD-7 | USA | 2006 | To identify probable cases of Generalised Anxiety Disorder and assess symptom severity in Generalised Anxiety Disorder. | 7 | No specific domains/dimensions identified | Yes | Spitzer RL, Kroenke K, Williams JB, Löwe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Archives of internal medicine. 2006 May 22;166(10):1092-7. | PubliclYes available | Unknown | https://www.phqscreeners.com/select-screener | Nil | Yes | Velescu, D. R., Marc, M. S., Traila, D., Pescaru, C. C., Hogea, P., Suppini, N., ... & Oancea, C. A Narrative Review of Self-Reported Scales to Evaluate Depression and Anxiety Symptoms in Adult Obstructive Sleep Apnea Patients. Medicina.v 2024;60(2):261. | |
| Mental health | Mental health, general | Symptom Checklist-90-Revised | SCL-90-R | USA | 2010 | To screen for a broad range of psychological problems and symptoms of psychopathology, it is also useful as a progress or outcomes measurement instrument. | 90 | 9 | Somatization; Obsessive-compulsive; Interpersonal sensibility; Depression; Anxiety; Anger-hostility; Phobic-anxiety; Paranoid ideation; Psychoticism | Yes | Derogatis LR, Unger R. Symptom checklist‐90‐revised. The Corsini encyclopedia of psychology. 2010 Jan 30:1-2. | Yes | Unknown | https://www.pearsonassessments.com/store/usassessments/en/Store/Profess… | Nil | Yes | Evans, K., Spiby, H., & Morrell, C. J. A psychometric systematic review of self‐report instruments to identify anxiety in pregnancy. Journal of Advanced Nursing. 2015;71(9):1986-2001. |
| Mental health | Mental health, general | Warwick-Edinburgh Mental Wellbeing Scale | WEMWBS | UK | 2007 | To measure mental wellbeing. | 14 | No specific domains/dimensions identified | Yes | Tennant R, Hiller L, Fishwick R, Platt S, Joseph S, Weich S, Parkinson J, Secker J, Stewart-Brown S. The Warwick-Edinburgh mental well-being scale (WEMWBS): development and UK validation. Health and Quality of life Outcomes. 2007 Dec;5:1-3. | Yes | Unknown | https://warwick.ac.uk/fac/sci/med/research/platform/wemwbs/ | Nil | Yes | Cooke PJ, Melchert TP, Connor K. Measuring well-being: A review of instruments. The Counseling Psychologist. 2016 Jul;44(5):730-57. Thapa Bajgain K, Amarbayan M, Wittevrongel K, McCabe E, Naqvi SF, Tang K, Aghajafari F, Zwicker JD, Santana M. Patient-reported outcome measures used to improve youth mental health services: a systematic review. Journal of Patient-Reported Outcomes. 2023 Feb 14;7(1):14. |
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| Mental health | Psychological distress | Brief Symptom Inventory | BSI | USA | 1983 | To describe the psychological distress and symptom patterns of psychiatric and medical patients, as well as community samples. | 53 | 9 | Somatization; Obsession-compulsion; Interpersonal sensitivity; Depression; Anxiety; Hostility; Phobic anxiety; Paranoid ideation; Psychoticism | Yes | Derogatis LR. BSI - Brief Symptom Inventory: Administration, Scoring and Procedures Manual. Minneapolis, MN: National Computer Systems, 1993. Derogatis LR, Melisaratos N. The brief symptom inventory: an introductory report. Psychological medicine. 1983 Aug;13(3):595-605. |
Yes | Yes, fees may apply | https://www.pearsonclinical.com.au/store/auassessments/en/Store/Profess… | Nil | Zijlema WL, Stolk RP, Löwe B, Rief W, White PD, Rosmalen JG. How to assess common somatic symptoms in large-scale studies: a systematic review of questionnaires. Journal of psychosomatic research. 2013 Jun 1;74(6):459-68. | |
| Mental health | Psychological distress | Kessler 10 Psychological Distress Scale | K10 | USA | 2002 | To assess non-specific psychological distress in epidemiologic surveys. | 10 | No specific domains/dimensions identified | Yes | Kessler RC, Andrews G, Colpe LJ, Hiripi E, Mroczek DK, Normand SL, Walters EE, Zaslavsky AM. Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychological medicine. 2002 Aug;32(6):959-76. Furukawa TA, Kessler RC, Slade T, Andrews G. The performance of the K6 and K10 screening scales for psychological distress in the Australian National Survey of Mental Health and Well-Being. Psychological medicine. 2003 Feb;33(2):357-62. |
PubliclYes available | Unknown | https://www.worksafe.qld.gov.au/__data/assets/pdf_file/0010/22240/kessler-psychological-distress-scale-k101.pdf | Nil | None identified in March 2025 | None identified in March 2025 | |
| Mental health | Psychological distress | Profile Of Mood States | POMS | USA | 1971 | To measure the effects on mood of various therapeutic approaches. | 65 | 6 | Anger; Confusion; Depression; Fatigue; Tension; Vigour | Yes | McNair DM. Manual for the Profile of Mood States. Educational and Industrial Testing Services. 1971. Curran SL, Andrykowski MA, Studts JL. Short form of the profile of mood states (POMS-SF): psychometric information. Psychological assessment. 1995 Mar;7(1):80. |
Yes | Unknown | https://www.pearsonassessments.com/store/usassessments/en/Store/Profess… | Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Substance disorders | Brief Addiction Monitor | BAM-R | USA | 2013 | For monitor patient progress during substance abuse treatment. | 17 | 3 | Recovery protection; Physical and psychological problems; Substance use and risk | Yes | Cacciola JS, Alterman AI, Dephilippis D, Drapkin ML, Valadez C Jr, Fala NC, Oslin D, McKay JR. Development and initial evaluation of the Brief Addiction Monitor (BAM). J Subst Abuse Treat. 2013 Mar;44(3):256-63. doi: 10.1016/j.jsat.2012.07.013. Epub 2012 Aug 14. PMID: 22898042; PMCID: PMC3602977. | No information | Unknown | Treatment Research Institute, 600 Public Ledger Building, 150 S. Independence Mall West, Philadelphia, PA 19106–3414, USA. Tel.: + 1 215 399 0980; fax: + 1 215 399 0987. jcacciola@tresearch.org |
Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Substance disorders | Drug Effects Questionnaire | DEQ | USA | 2013 | To assess two key aspects of subjective experience: the strength of substance effects and desirability of substance effects. | 5 | 5 | Each item is considered individually | Yes | Morean ME, de Wit H, King AC, Sofuoglu M, Rueger SY, O'Malley SS. The drug effects questionnaire: psychometric support across three drug types. Psychopharmacology (Berl). 2013 May;227(1):177-92. | No information | Unknown | Meghan E. Morean, Department of Psychiatry, Yale University School of Medicine, Connecticut Mental Health Center, Office S-229, 34 Park Street, New Haven, CT, 06519, USA | Nil | None identified in March 2025 | None identified in March 2025 |
| Mental health | Substance disorders, nicotine | Fagerström Test for Nicotine Dependence Tobacco Users | FTND-ST | USA | 2017 | To measure nicotine dependence in smokeless tobacco users. | 6 | No specific domains/dimensions identified | Yes | Ebbert JO, Patten CA, Schroeder DR. The Fagerström Test for Nicotine Dependence-Smokeless Tobacco (FTND-ST). Addict Behav. 2006 Sep;31(9):1716-21. Epub 2006 Jan 31. Mushtaq N, Beebe LA. Psychometric properties of Fagerström test for nicotine dependence for smokeless tobacco users (FTND-ST). Nicotine & Tobacco Research. 2017 Sep 1;19(9):1095-101. |
No information | Unknown | Nasir Mushtaq, PhD, Department of Biostatistics and Epidemiology, University of Oklahoma Health Sciences Center, 4502 East 41st Street, SAC 1G06, Tulsa, OK 74135, USA. Telephone: 918-660-3680; Fax: 918-660-3671; E-mail: Nasir-Mushtaq@ouhsc.edu | Nil | Yes | Mushtaq N, Beebe LA. A review of the validity and reliability of smokeless tobacco dependence measures. Addictive behaviors. 2012 Apr 1;37(4):361-6. | |
| Musculoskeletal | Arthritis | Thumb Disability Examination | TDX | USA | 2020 | Measure pain and function of people with basal joint arthritis. | 20 | 3 | Pain; Functional status; Satisfaction | Yes | Bäcker HC, Freibott CE, Rizzo M, Lee DH, Glickel SZ, Strauch RJ, Rosenwasser MP. Thumb Disability Examination (TDX) as a New Reliable Tool for Basal Joint Arthritis. J Wrist Surg. 2020 Jun;9(3):209-213. doi: 10.1055/s-0040-1701510. Epub 2020 Feb 19. PMID: 32509424; PMCID: PMC7263863. | No information | Unknown | Melvin P. Rosenwasser, MD, ttc@columbia.edu, Department of Orthopaedic Surgery, Trauma Training Center, PH-1164, 622 West 168th Street, New York, NY 10032, | https://pmc.ncbi.nlm.nih.gov/articles/instance/5397310/bin/10-1055-s-0036-1593612-s160080.pdf | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Arthritis, Rheumatoid | Activity Participation Questionnaire | APaQ | Canada | 2009 | To measure activity participation for patients with Rheumatoid Arthritis. | 2 | No specific domains/dimensions identified | Yes | Li T, Wells G, Westhovens R, Tugwell P. Validation of a simple activity participation measure for rheumatoid arthritis clinical trials. Rheumatology. 2009 Feb 1;48(2):170-5. | Yes | Unknown | https://www.researchgate.net/publication/23785079_Validation_of_a_simple_activity_participation_measure_for_rheumatoid_arthritis_clinical_trials/figures?lo=1 | None identified in March 2025 | None identified in March 2025 | ||
| Musculoskeletal | Arthritis, Rheumatoid | Arthritis Impact Measurement Scale (Revised And Expanded Version) | AIMS2 | USA | 1992 | To measure changes in global health, pain, mobility and social function in patients with arthritis. | 101 | 12 | Mobility level; Walking and bending; Hand and finger function; Arm function; Self-care; Household tasks; Social activities; Support from family and friends; Arthritis pain; Work; Level of tension; Mood | Yes | Meenan RF, Mason JH, Anderson JJ, Guccione AA, Kazis LE. AIMS2. The content and properties of a revised and expanded Arthritis Impact Measurement Scales Health Status Questionnaire. Arthritis & Rheumatism: Official Journal of the American College of Rheumatology. 1992 Jan;35(1):1-0. | PubliclYes available | Unknown | https://geriatrictoolkit.missouri.edu/aims2/AIMS2-ORIGINAL.pdf | Yes | Lee J, Kim SH, Moon SH, Lee EH. Measurement properties of rheumatoid arthritis-specific quality-of-life questionnaires: systematic review of the literature. Quality of life research. 2014 Dec;23:2779-91 Swinkels RA, Dijkstra PU, Bouter LM. Reliability, validity and responsiveness of instruments to assess disabilities in personal care in patients with rheumatic disorders: a systematic review. Clinical and experimental rheumatology. 2005;23(1):71-9 |
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| Musculoskeletal | Arthritis, Rheumatoid | Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional Questionnaire | BRAF-MDQ | UK | 2017 | To measure fatigue in Rheumatoid Arthritis patients, measuring 4 separate dimensions, facilitating the development of individually-tailored fatigue management programs. | 20 | 4 | Physical; Living; Cognitive; Emotional | Yes | Hewlett S, Kirwan J, Bode C, Cramp F, Carmona L, Dures E, Englbrecht M, Fransen J, Greenwood R, Hagel S, van de Laar M, Molto A, Nicklin J, Petersson IF, Redondo M, Schett G, Gossec L. The revised Bristol Rheumatoid Arthritis Fatigue measures and the Rheumatoid Arthritis Impact of Disease scale: validation in six countries. Rheumatology (Oxford). 2018 Feb 1;57(2):300-308 | Yes | Unknown | Sarah Hewlett, Academic Rheumatology Unit, Zone B-504, Bristol Royal Infirmary, Bristol BS2 8HW, UK. E-mail: Sarah.Hewlett@uwe.ac.uk | Nil | Yes | Egerton T, Riphagen II, Nygård AJ, Thingstad P, Helbostad JL. Systematic content evaluation and review of measurement properties of questionnaires for measuring self-reported fatigue among older people. Quality of Life Research. 2015 Sep;24:2239-55 Küçükdeveci AA, Elhan AH, Erdoğan BD, Kutlay Ş, Gökmen D, Ateş C, Yüksel S, Lundgren-Nilsson A, Escorpizo R, Stucki G, Tennant A. Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades. RMD open. 2021 Aug 1;7(2):e001707. |
| Musculoskeletal | Arthritis, Rheumatoid | Compliance Questionnaire Rheumatology | CQR | USA | 2003 | To measure rheumatology patient compliance to drug regimens, identify factors that contribute to suboptimal patient compliance, and possibly can be used to predict future compliance in patients with rheumatoid arthritis, polymyalgia rheumatica, and gout. | 19 | No specific domains/dimensions identified | Yes | de Klerk E, van der Heijde D, Landewé R, van der Tempel H, van der Linden S. The compliance-questionnaire-rheumatology compared with electronic medication event monitoring: a validation study. The Journal of rheumatology. 2003 Nov 1;30(11):2469-75. | No information | Unknown | Lindsay Hughles, Health Psychology Section, Institute of Psychiatry, King’s College London, 5th Floor Bermondsey Wing, Guy’s Hospital, London SE1 9RT, England | https://bmcmusculoskeletdisord.biomedcentral.com/articles/10.1186/1471-… | Yes | Küçükdeveci AA, Elhan AH, Erdoğan BD, et al. Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades. RMD Open. 2021;7(2):e001707. doi:10.1136/rmdopen-2021-001707 | |
| Musculoskeletal | Arthritis, Rheumatoid | Duruoz Hand Index | DHI | France | 1996 | To evaluate activity limitations of the hand in people with rheumatoid arthritis, and has also been validated in stroke, spinal cord injury, cerebral palsy, and mixed populations. | 18 | No specific domains/dimensions identified | Yes | Duruöz MT, Poiraudeau S, Fermanian J, Menkes CJ, Amor B, Dougados M, Revel M. Development and validation of a rheumatoid hand functional disability scale that assesses functional handicap. J Rheumatol. 1996 Jul;23(7):1167-72 | Yes | Unknown | M T Duruöz, Department of Rheumatology, René Descartes University, IFRH, Cochin Hospital, Paris, France. | Nil | Yes | Ziebart C, Bobos P, Furtado R, Dabbagh A, MacDermid J. Patient-reported outcome measures used for hand and wrist disorders: An overview of systematic reviews. J Hand Ther. 2023;36(3):719-729. doi:10.1016/j.jht.2022.10.007 | |
| Musculoskeletal | Arthritis, Rheumatoid | Foot Function Index - Revised | FFI-R | USA | 2006 | To measure the impact of foot pathology on function in terms of pain, disability, activity restriction, and social function. | 68 | 4 | Pain and stiffness; Difficulty; Activity limitation; Social issues | Yes | Budiman-Mak E, Conrad K, Stuck R, Matters M. Theoretical model and Rasch analysis to develop a revised Foot Function Index. Foot Ankle Int. 2006 Jul;27(7):519-27 | PubliclYes available | Unknown | https://www.physio-pedia.com/Foot_Function_Index_(FFI)#cite_note-8 | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Arthritis, Rheumatoid | Leeds Foot Impact Scale for Rheumatoid Arthritis | LFIS-RA | UK | 2005 | To assess foot status in rheumatoid arthritis. | 51 | 2 | Impairments/shoes; Activities/Participation | Yes | Helliwell P, Reay N, Gilworth G, Redmond A, Slade A, Tennant A, Woodburn J. Development of a foot impact scale for rheumatoid arthritis. Arthritis Rheum. 2005 Jun 15;53(3):418-22 | Yes | Unknown | https://licensing.leeds.ac.uk/product/lfis-ra-leeds-foot-impact-scale#:…. | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Arthritis, Rheumatoid | Polymyalgia rheumatica-Impact Scale | PMR-IS | UK | 2023 | To measure the impacts of polymyalgia rheumatica from the patient's perspective. | 26 | 4 | Symptoms; Function; Emotional and psychological well-being; Steroid side effects | Yes | Twohig H, Mitchell C, Mallen CD, Muller S. Development and psychometric evaluation of the PMR-Impact Scale: a new patient reported outcome measure for polymyalgia rheumatica. Rheumatology (Oxford). 2023 Feb 1;62(2):758-765. doi: 10.1093/rheumatology/keac317. PMID: 35639659; PMCID: PMC9891434. | No information | Unknown | Helen Twohig, School of Medicine, Keele University, Keele, Staffordshire ST5 5BG, UK. E-mail: h.j.twohig@keele.ac.uk | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Arthritis, Rheumatoid | Revised Cedars-Sinai Health-Related Quality of Life for Rheumatoid Arthritis | rCSHQ-RA | USA | 2006 | To measure all important aspects of health-related quality of life for patients with Rheumatoid Arthritis. | 48 | 7 | Dexterity; Mobility; Physical activity; Emotional well-being; Social well-being; Pain/discomfort; Fatigue | Yes | Chiou CF, Sherbourne CD, Cornelio I, Lubeck DP, Paulus HE, Dylan M, Chang CH, Weisman MH. Development and validation of the revised Cedars-Sinai health-related quality of life for rheumatoid arthritis instrument. Arthritis Rheum. 2006 Dec 15;55(6):856-63 | No information | Unknown | mdylan@cerner.com, Cerner Health Insights, 9100 Wilshire Boulevard, Suite 655E, Beverly Hills, CA 90212 | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Arthritis, Rheumatoid | Rheumatoid Arthritis Foot Disease Activity Index-5 | RADAI-F5 | UK | 2021 | To capture foot disease activity in people with rheumatoid arthritis. | 5 | No specific domains/dimensions identified | Yes | Hoque A, Gallagher K, McEntegart A, Porter D, Steultjens M, Woodburn J, Hendry GJ. Measuring Inflammatory Foot Disease in Rheumatoid Arthritis: Development and Validation of the Rheumatoid Arthritis Foot Disease Activity Index-5. Arthritis Care Res (Hoboken). 2021 Sep;73(9):1290-1299 | No information | Unknown | https://www.gcu.ac.uk/__data/assets/pdf_file/0026/72395/Rheumatoid_Arthritis_Foot_Disease_Activity_Index-5_RADAI-F5.pdf | None identified in March 2025 | None identified in March 2025 | ||
| Musculoskeletal | Arthritis, Rheumatoid | Rheumatoid Arthritis Impact Of Disease Scale | RAID | France | 2011 | To assess the seven most important domains of impact of Rheumatoid Arthritis from the patient's perspective. | 7 | 7 | Pain; Functional Disability; Fatigue; Sleep; Physical wellbeing; Emotional wellbeing; Coping | Yes | Gossec L, Paternotte S, Aanerud GJ, Balanescu A, Boumpas DT, Carmona L, de Wit M, Dijkmans BA, Dougados M, Englbrecht M, Gogus F. Finalisation and validation of the rheumatoid arthritis impact of disease score, a patient-derived composite measure of impact of rheumatoid arthritis: a EULAR initiative. Annals of the rheumatic diseases. 2011 Jun 1;70(6):935-42. | Yes | Unknown | https://oml.eular.org/oml_search_results.cfm?action=showResults | Nil | Yes | Küçükdeveci AA, Elhan AH, Erdoğan BD, Kutlay Ş, Gökmen D, Ateş C, Yüksel S, Lundgren-Nilsson A, Escorpizo R, Stucki G, Tennant A. Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades. RMD open. 2021 Aug 1;7(2):e001707. Lee J, Kim SH, Moon SH, Lee EH. Measurement properties of rheumatoid arthritis-specific quality-of-life questionnaires: systematic review of the literature. Quality of life research. 2014 Dec;23:2779-91. |
| Musculoskeletal | Arthritis, Rheumatoid | Rheumatoid Arthritis Quality Of Life Questionnaire | RAQoL | UK; The Netherlands | 1997 | To assess needs-based quality of life of patients with rheumatoid arthritis. | 30 | No specific domains/dimensions identified | Yes | de Jong Z, Van der Heijde DM, McKenna SP, Whalley D. The reliability and construct validity of the RAQoL: a rheumatoid arthritis-specific quality of life instrument. British journal of rheumatology. 1997 Aug 1;36(8):878-83. | Yes | Yes, fees may apply | https://www.galen-research.com/measures-database/ | Nil | Yes | Lee J, Kim SH, Moon SH, Lee EH. Measurement properties of rheumatoid arthritis-specific quality-of-life questionnaires: systematic review of the literature. Quality of life research. 2014 Dec;23:2779-91 Küçükdeveci AA, Elhan AH, Erdoğan BD, Kutlay Ş, Gökmen D, Ateş C, Yüksel S, Lundgren-Nilsson A, Escorpizo R, Stucki G, Tennant A. Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades. RMD open. 2021 Aug 1;7(2):e001707. |
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| Musculoskeletal | Arthritis, Rheumatoid | Rheumatoid Arthritis Symptom Impact Questionnaire | RASIQ | UK | 2021 | To record key symptoms and impacts of Rheumatoid Arthritis within a 24 hour recall period. | 16 | 3 | Impacts; Joint Stiffness; Joint Pain | Yes | Becker B, Bracher M, Chauhan D, Rendas-Baum R, Lin X, Raymond K, O’Connor M, Kosinski M. Development, psychometric evaluation and cognitive debriefing of the rheumatoid arthritis symptom and impact questionnaire (RASIQ). Journal of Patient-Reported Outcomes. 2021 Dec 11;5(1):129. | No information | Unknown | marguerite.x.bracher@gsk.com <marguerite.x.bracher@gsk.com> | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Arthritis, Rheumatoid | Rheumatoid Arthritis Symptom Questionnaire | RASQ | USA | 2017 | To assess the signs and symptoms of rheumatoid arthritis. | 8 | No specific domains/dimensions identified | Yes | Banderas B, Skup M, Shields AL, Mazar I, Ganguli A. Development of the Rheumatoid Arthritis Symptom Questionnaire (RASQ): a patient reported outcome scale for measuring symptoms of rheumatoid arthritis. Current Medical Research and Opinion. 2017 Sep 2;33(9):1643-51. | No information | Unknown | Benjamin Banderas; benjamin.banderas@adelphivalues.com; Adelphi Values, 290 Congress St., Boston, MA 02210, USA. | Nil | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Arthritis, Rheumatoid | Rheumatoid Arthritis-Work Instability Scale | RA-WIS | UK | 2003 | To explore the concept of work instability, a state in which the consequences of a mismatch between an individual's functional abilities and the demands of his or her job could threaten continuing employment if not resolved, in people with rheumatoid arthritis. | 23 | No specific domains/dimensions identified | Yes | Gilworth G, Chamberlain MA, Harvey A, Woodhouse A, Smith J, Smyth MG, Tennant A. Development of a work instability scale for rheumatoid arthritis. Arthritis Care & Research. 2003 Jun 15;49(3):349-54. | Yes | Unknown | https://licensing.leeds.ac.uk/product/ra-wis-early-rheumatoid-arthritis…! | Nil | Yes | Mateen BA, Doogan C, Hayward K, Hourihan S, Hurford J, Playford ED. Systematic review of health-related work outcome measures and quality criteria-based evaluations of their psychometric properties. Archives of physical medicine and rehabilitation. 2017 Mar 1;98(3):534-60. Küçükdeveci AA, Elhan AH, Erdoğan BD, Kutlay Ş, Gökmen D, Ateş C, Yüksel S, Lundgren-Nilsson A, Escorpizo R, Stucki G, Tennant A. Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades. RMD open. 2021 Aug 1;7(2):e001707. |
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| Musculoskeletal | Arthritis, Rheumatoid | Routine Assessment Of Patient Index Data 3 | RAPID3 | USA | 1999 | To assess function and symptoms in people with rheumatoid arthritis. | 12 | 3 | Physical function; Pain; Patient global assessment | Yes | Pincus T, Swearingen C, Wolfe F. Toward a multidimensional Health Assessment Questionnaire (MDHAQ): assessment of advanced activities of daily living and psychological status in the patient-friendly health assessment questionnaire format. Arthritis Rheum. 1999 Oct;42(10):2220-30 | No information | Unknown | Theodore Pincus, Rush University Medical Center, Chicago, United States of America | https://www.rinvoq.com/rheumatoid-arthritis/about-ra/rapid3-ra-assessment | Yes | Hendrikx J, de Jonge MJ, Fransen J, Kievit W, van Riel PL. Systematic review of patient-reported outcome measures (PROMs) for assessing disease activity in rheumatoid arthritis. RMD open. 2016 Aug 1;2(2):e000202. Pickles T, Macefield R, Aiyegbusi OL, Beecher C, Horton M, Christensen KB, Phillips R, Gillespie D, Choy E. Patient reported outcome measures for rheumatoid arthritis disease activity: a systematic review following COSMIN guidelines. RMD open. 2022 Mar 1;8(1):e002093. |
| Musculoskeletal | Arthritis, Rheumatoid | Steroid PRO - Glucocorticoid-specific Patient-Reported Outcome Questionnaire | Steroid PRO | UK | 2023 | To measure the impact of glucocorticoid therapy in people with rheumatic diseases in clinical trials and clinical practice. | 15 | 4 | Social impact; Impact on appearance; Psychological impact; Treatment concerns | Yes | Bridgewater S, Shepherd MA, Dawson J, Richards P, Silverthorne C, Ndosi M, Almeida C, Black RJ, Cheah JT, Dures E, Ghosh N. Measuring the impact of steroid therapy on health-related quality of life in patients with rheumatic diseases: international development of a glucocorticoid treatment–specific patient-reported outcome measure. Rheumatology. 2023 Nov 1;62(11):3565-75. Bridgewater S, Ndosi M, Dawson J, Richards P, Silverthorne C, Dures E, Goodman SM, Hill C, Mackie SL, Robson JC. Validation of a new glucocorticoid-specific Patient-Reported Outcome Questionnaire (the Steroid PRO). Ann Rheum Dis. 2023 Nov 10:ard-2023-224946 |
Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/steroid-pro-glucocorticoids/ | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Arthritis, Rheumatoid; Neuromuscular Conditions; Mixed Populations; Joint Pain and Fractures | Foot Function Index | FFI | USA | 1991 | To measure the impact of foot pathology on function in terms of pain, disability and activity restriction. | 23 | 3 | Pain; Disability; Activity limitation | Yes | Budiman-Mak E, Conrad KJ, Roach KE. The Foot Function Index: a measure of foot pain and disability. Journal of clinical epidemiology. 1991 Jan 1;44(6):561-70. Pourtier-Piotte C, Pereira B, Soubrier M, Thomas E, Gerbaud L, Coudeyre E. French validation of the Foot Function Index (FFI). Ann Phys Rehabil Med. 2015 Oct;58(5):276-82 |
PubliclYes available | Unknown | https://www.sralab.org/rehabilitation-measures/foot-function-index | Yes | Jia Y, Huang H, Gagnier JJ. A systematic review of measurement properties of patient-reported outcome measures for use in patients with foot or ankle diseases. Qual Life Res. 2017;26(8):1969-2010. doi:10.1007/s11136-017-1542-4 | |
| Musculoskeletal | Arthritis, Rheumatoid; Osteoarthritis; Lupus; Chronic Pain; Chronic upper limb disorders; Ankylosing spondylitis; Sclerosis, systemic; Primary Sjögren’s Syndrome | Evaluation Of Daily Activity Questionnaire | EDAQ | UK | 2015 | To evaluate, in detail, a person’s daily activity abilities with and without using ergonomic solutions or help. | 148 | 15 | PART 1 (single dimension, 10 items): Current status, PART 2 (14 dimensions, 138 items): Impact of condition on: Leisure and social; Caring; Gardening and house maintenance; Moving outdoors and shopping; Communication; Moving and transfers; Laundry and clothes care; Cleaning the house; Moving indoors; Cooking; Bathing and showering; Dressing; In the bathroom and personal care; Eating and drinking |
Yes | Hammond A, Tennant A, Tyson SF, Nordenskiöld U, Hawkins R, Prior Y. The reliability and validity of the English version of the Evaluation of Daily Activity Questionnaire for people with rheumatoid arthritis. Rheumatology. 2015 Sep 1;54(9):1605-15. | Yes | Unknown | Prof Alison Hammond, A.Hammond@salford.ac.uk (Creative Commons Licence for clinical and research work, licence required for commercial use) | Nil | Yes | Lundgren-Nilsson Å, Dencker A, Palstam A, Person G, Horton MC, Escorpizo R, Küçükdeveci AA, Kutlay S, Elhan AH, Stucki G, Tennant A. Patient-reported outcome measures in osteoarthritis: a systematic search and review of their use and psychometric properties. RMD open. 2018 Dec 1;4(2):e000715 Küçükdeveci AA, Elhan AH, Erdoğan BD, Kutlay Ş, Gökmen D, Ateş C, Yüksel S, Lundgren-Nilsson A, Escorpizo R, Stucki G, Tennant A. Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades. RMD open. 2021 Aug 1;7(2):e001707. |
| Musculoskeletal | Back pain | Back Bournemouth Questionnaire | BBQ | UK | 1999 | To measure the change in key symptom domains in low back pain patients. | 7 | No specific domains/dimensions identified | Yes | Bolton JE, Breen AC. The Bournemouth Questionnaire: a short-form comprehensive outcome measure. I. Psychometric properties in back pain patients. Journal of manipulative and physiological therapeutics. 1999 Oct 1;22(8):503-10. | Yes | Unknown | Jennifer E. Bolton, Anglo-European College of Chiropractic, Bournemouth, England | http://healthnetworksolutions.net/HNS%20Forms/BournemouthBack.pdf | Yes | Wiitavaara B, Heiden M. Content and psychometric evaluations of questionnaires for assessing physical function in people with low back disorders. A systematic review of the literature. Disability and Rehabilitation. 2020 Jan 16;42(2):163-72. Grotle M, Brox JI, Vøllestad NK. Functional status and disability questionnaires: what do they assess?: a systematic review of back-specific outcome questionnaires. Spine. 2005 Jan 1;30(1):130-40. |
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| Musculoskeletal | Back pain | Back Pain Attitudes Questionnaire | Back-PAQ | NZ | 2023 | To assess back pain-related beliefs and attitudes of the general public, those experiencing back pain and health professionals. | 34 | 5 | Perceptions of own back; Looking after own back; Perceptions on back pain in general; Management of back pain; Recovering from back pain | Yes | Pierobon A, Darlow B. Back Pain Attitudes Questionnaire (Back-PAQ). InInternational Handbook of Behavioral Health Assessment 2023 Jul 27 (pp. 1-14). Cham: Springer International Publishing. | No information | Unknown | https://www.otago.ac.nz/__data/assets/pdf_file/0020/315614/back-pain-attitudes-questionnaire-34-item-656772.pdf | Yes | McGhie-Fraser B, Lucassen P, Ballering A, et al. Persistent somatic symptom related stigmatisation by healthcare professionals: A systematic review of questionnaire measurement instruments. J Psychosom Res. 2023;166:111161. doi:10.1016/j.jpsychores.2023.111161 | |
| Musculoskeletal | Back pain | Back Pain Functional Scale | BPFS | Canada | 2000 | To assess perceptions of functional status of people with back pain. | 12 | No specific domains/dimensions identified | Yes | Stratford PW, Binkley JM, Riddle DL. Development and initial validation of the back pain functional scale. Spine. 2000;25(16):2095-102 | Yes | Unknown | http://geriatricphysiotherapy.yolasite.com/resources/Back_Pain_Function_Scale_(BPFS)_of_Stratford_et_al.pdf | Yes | Grotle M, Brox JI, Vøllestad NK. Functional status and disability questionnaires: what do they assess? A systematic review of back-specific outcome questionnaires. Spine (Phila Pa 1976). 2005;30(1):130-140. | ||
| Musculoskeletal | Back pain | Dallas Pain Questionnaire | DPQ | USA | 1989 | To assess the amount of chronic spinal pain that affects four aspects (daily and work-leisure activities, anxiety-depression, and social interest) of the patients' lives. | 16 | 4 | Daily activities; Work/Leisure; Anxiety/Depression; Social activities | Yes | Lawlis GF, Cuencas RA, Selby DA, McCoy CE. The development of the Dallas Pain Questionnaire: an assessment of the impact of spinal pain on behavior. Spine. 1989 May 1;14(5):511-6. | No information | Unknown | https://oarsi.org/sites/oarsi/files/docs/2019/dallas_pain_questionnaire_complete.pdf | Yes | Grotle M, Brox JI, Vøllestad NK. Functional status and disability questionnaires: what do they assess?: a systematic review of back-specific outcome questionnaires. Spine. 2005 Jan 1;30(1):130-40. Millard RW, Beattie PF, Jones RH. A comprehensive review of questionnaires to evaluate chronic pain-related disability. Critical Reviews™ in Physical and Rehabilitation Medicine. 1997;9(1). |
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| Musculoskeletal | Back pain | Extended Aberdeen Spine Pain Scale | EASPS | UK | 2001 | To measure health status in patients with Low Back Pain, Upper Back Pain and Neck Pain. | 28 | 3 | Neck (Functional disability; Painful restricted neck movement; Neck restriction vs. arm symptoms); Upper back (Functional disability; Restricted trunk movement contrasted with activity restriction; Painful respiratory movement contrasted with pain duration); Lower back (Functional disability; Lower leg symptoms; Painful respiratory movement contrasted with activity restriction) | Yes | Williams NH, Wilkinson C, Russell IT. Extending the Aberdeen Back Pain Scale to include the whole spine: a set of outcome measures for the neck, upper and lower back. Pain. 2001 Dec 1;94(3):261-74. | No information | Unknown | Nefyn Williams, Nefyn.Williams@liverpool.ac.uk | Nil | Yes | Wiitavaara B, Heiden M. Content and psychometric evaluations of questionnaires for assessing physical function in people with low back disorders. A systematic review of the literature. Disability and Rehabilitation. 2020 Jan 16;42(2):163-72. Misailidou V, Malliou P, Beneka A, Karagiannidis A, Godolias G. Assessment of patients with neck pain: a review of definitions, selection criteria, and measurement tools. Journal of chiropractic medicine. 2010 Jun 1;9(2):49-59. |
| Musculoskeletal | Back pain | Functional Rating Index | FRI | USA | 2001 | To measure patient-reported disability in people with spinal conditions. | 10 | No specific domains/dimensions identified | Yes | Feise RJ, Menke JM. Functional rating index: a new valid and reliable instrument to measure the magnitude of clinical change in spinal conditions. Spine. 2001 Jan 1;26(1):78-87. | Yes | Unknown | Institute of Evidence-Based Chiropractic | https://www.chiroevidence.com/FRI-1%20page.pdf | Yes | Leahy E, Davidson M, Benjamin D, Wajswelner H. Patient-Reported Outcome (PRO) questionnaires for people with pain in any spine region. A systematic review. Manual therapy. 2016 Apr 1;22:22-30. Grotle M, Brox JI, Vøllestad NK. Functional status and disability questionnaires: what do they assess?: a systematic review of back-specific outcome questionnaires. Spine. 2005 Jan 1;30(1):130-40. |
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| Musculoskeletal | Back pain | Golf-specific Low Back Pain questionnaire | GLBP | USA | 2023 | To evaluate multiple constructs of low back pain in golfers including the severity, frequency, and functional limitations to better understand how LBP affects golfers to best target intervention. | 23 | 3 | Severity; Frequency; Limitation | Yes | Skibski A, Goetschius J, Mangum LC. Exploration of the Golf-Specific Low Back Pain Questionnaire. Clin J Sport Med. 2023 Nov 1;33(6):643-647. doi: 10.1097/JSM.0000000000001160. Epub 2023 May 15. PMID: 37184863. | No information | Unknown | L. Colby Mangum, PhD, ATC, HS Bldg II Room 235 4364 Scorpius St Orlando, FL 32816-2205 (lauren.mangum@ucf.edu). | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Back pain | Micheli Functional Scale | MFS | USA | 2012 | To assess pain and functional levels in the young athlete. | 5 | No specific domains/dimensions identified | Yes | dʼHemecourt PA, Zurakowski D, dʼHemecourt CA, Curtis C, Ugrinow V, Deriu L, Micheli LJ. Validation of a new instrument for evaluating low back pain in the young athlete. Clin J Sport Med. 2012 May;22(3):244-8. doi: 10.1097/JSM.0b013e318249a3ce. PMID: 22382433. | No information | Unknown | Pierre d'Hemecourt, Division of Sports Medicine, Children's Hospital, Boston, 319 Longwood Ave, Boston, MA 02115, USA. pierre.dhemecourt@childrens.harvard.edu | Nil | Yes | Azevedo VD, Ferreira Silva RM, de Carvalho Borges SC, Fernades MD, Miñana-Signes V, Monfort-Pañego M, Silva Noll PR, Noll M. Instruments for assessing back pain in athletes: a systematic review. Plos one. 2023 Nov 3;18(11):e0293333 Marshall AN, Root HJ, Valovich McLeod TC, Lam KC. Patient-reported outcome measures for pediatric patients with sport-related injuries: a systematic review. Journal of athletic training. 2022 Apr 1;57(4):371-84 |
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| Musculoskeletal | Back pain | Orebro Musculoskeletal Screening Questionnaire | OMSQ-12 | Australia | 2012 | To identify patients at risk of developing persistent back pain problems. | 21 | 6 | Physical function; Psychological; Problems; Personal; Other; Fear Avoidance | Yes | Gabel CP, Melloh M, Burkett B, Osborne J, Yelland M. The Örebro Musculoskeletal Screening Questionnaire: validation of a modified primary care musculoskeletal screening tool in an acute work injured population. Man Ther. 2012 Dec;17(6):554-65 | Yes | Unknown | https://aci.health.nsw.gov.au/__data/assets/pdf_file/0004/212908/WorkCover-Orebro-musculoskeletal-pain-questionnaire.pdf | Yes | Fennelly O, Blake C, Desmeules F, Stokes D, Cunningham C. Patient‐reported outcome measures in advanced musculoskeletal physiotherapy practice: a systematic review. Musculoskeletal Care. 2018 Mar;16(1):188-208. Howe TE, Dawson LJ, Syme G, Duncan L, Reid J. Evaluation of outcome measures for use in clinical practice for adults with musculoskeletal conditions of the knee: a systematic review. Manual therapy. 2012 Apr 1;17(2):100-18. |
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| Musculoskeletal | Back pain | Oswestry Disability Index | ODI | UK | 1980 | To indicate the extent to which a person’s functional level is restricted by disability, and is commonly used for Low Back Pain. | 10 | No specific domains/dimensions identified | Yes | Fairbank JC, Couper J, Davies JB, O’Brien JP. The Oswestry low back pain disability questionnaire. Physiotherapy. 1980 Aug 1;66(8):271-3. | Yes | Unknown | jeremy.fairbank@ndorms.ox.ac.uk | https://maic.qld.gov.au/wp-content/uploads/2016/02/Oswestry_Low_Back_Di… | Yes | Silva TF, Nunes AC, Barreto MC, Castro SS, Jesus-Moraleida FR. Questionnaires that assess disability in children and adolescents with low back pain adhere to the concepts of the International classification of functioning, disability and health (ICF), but lack validity for this population: a systematic review. Disability and Rehabilitation. 2024 May 7;46(10):1979-89. Johnsen LG, Hellum C, Nygaard ØP, Storheim K, Brox JI, Rossvoll I, Leivseth G, Grotle M. Comparison of the SF6D, the EQ5D, and the oswestry disability index in patients with chronic low back pain and degenerative disc disease. BMC musculoskeletal disorders. 2013 Dec;14:1-9. |
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| Musculoskeletal | Back pain | Pain Self-Efficacy Questionnaire | PSEQ | Australia | 2007 | To assess the level of self-confidence in performing functional and social activities despite the presence of pain. | 10 | No specific domains/dimensions identified | Yes | Nicholas MK. The pain self-efficacy questionnaire: taking pain into account. European journal of pain. 2007 Feb 1;11(2):153-63. Nicholas MK. The pain self-efficacy questionnaire: Taking pain into account. Eur J Pain. 2007 Feb;11(2):153-63. See also: Nicholas MK, McGuire BE, Asghari A. A 2-item short form of the Pain Self- efficacy Questionnaire: development and psychometric evaluation of PSEQ-2. J Pain. 2015 Feb;16(2):153-63 |
Yes | Unknown | Instrument copyrighted by the author, Prof. Michael Nicholas | https://orthotoolkit.com/pseq/ | Yes | Köke AJ, Bastiaenen CH, Kleijnen J, Telgenkamp I, Smeets RJ, Beckers LW. Measurement properties of patient-reported outcome measures used in rehabilitation of adults with chronic musculoskeletal pain: A mapping review. Journal of Back and Musculoskeletal Rehabilitation. 2023 Jan 1;36(3):595-607. |
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| Musculoskeletal | Back pain | Patient Assessment for Low Back Pain-Impacts | PAL-I | USA | 2020 | To measure impact, change and treatment benefit in patients with chronic low back pain. | 9 | No specific domains/dimensions identified | Yes | Bushnell DM, Martin ML, Eerdekens M, Christoph A, Kralidis G, Liedgens H. Pain assessment for chronic lower back pain: performance of the PAL-S and PAL-I patient-reported measures for symptoms and impacts. Current Medical Research and Opinion. 2020 May 3;36(5):853-63. | No information | Unknown | Donald M. Bushnell Health Research Associates, Inc, Mountlake Terrace, WA, USA; don.bushnell@evidera.com | Nil | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Back pain | Patient Assessment for Low Back Pain-Symptoms | PAL-S | USA | 2020 | To assess symptom change and treatment benefit in patients with chronic low back pain. | 13 | No specific domains/dimensions identified | Yes | Bushnell DM, Martin ML, Eerdekens M, Christoph A, Kralidis G, Liedgens H. Pain assessment for chronic lower back pain: performance of the PAL-S and PAL-I patient-reported measures for symptoms and impacts. Current Medical Research and Opinion. 2020 May 3;36(5):853-63. | No information | Unknown | Donald M. Bushnell Health Research Associates, Inc, Mountlake Terrace, WA, USA; don.bushnell@evidera.com | Nil | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Back pain | Quebec Back Pain Disability Scale | QBPDS | Canada | 1995 | To measure functional disability for patients with back pain. | 20 | 6 | Bed/rest; Sitting/standing; Ambulation; Movement; Bending/stooping; Handling of large or heavy objects | Yes | Kopec JA, Esdaile JM, Abrahamowicz M, Abenhaim L, Wood-Dauphinee S, Lamping DL, Williams JI. The Quebec back pain disability scale: measurement properties. Spine. 1995 Feb 1;20(3):341-52. Kopec JA, Esdaile JM, Abrahamowicz M, Abenhaim L, Wood-Dauphinee S, Lamping DL, Williams JI. The Quebec back pain disability scale: conceptualization and development. Journal of clinical epidemiology. 1996 Feb 1;49(2):151-61. |
No information | Unknown | J A Kopec, Department of Epidemiology and Biostatistics, Montreal General Hospital, McGill University, Canada; jacek.kopec@ubc.ca | https://www.tac.vic.gov.au/files-to-move/media/upload/quebec_scale.pdf | Yes | Chiarotto A, Ostelo RW, Boers M, Terwee CB. A systematic review highlights the need to investigate the content validity of patient-reported outcome measures for physical functioning in patients with low back pain. Journal of clinical epidemiology. 2018 Mar 1;95:73-93 Millard RW, Beattie PF, Jones RH. A comprehensive review of questionnaires to evaluate chronic pain-related disability. Critical Reviews™ in Physical and Rehabilitation Medicine. 1997;9(1). |
| Musculoskeletal | Back pain | Roland-Morris Disability Questionnaire | RDQ or RMDQ | UK | 1983 | To assess physical disability due to low back pain. | 24 | No specific domains/dimensions identified | Yes | Roland M, Morris R. A study of the natural history of back pain: part I: development of a reliable and sensitive measure of disability in low-back pain. spine. 1983 Mar 1;8(2):141-4. | PubliclYes available | Unknown | https://www.rmdq.org/ | http://www.rmdq.org/Download.htm | Yes | Chiarotto A, Maxwell LJ, Terwee CB, Wells GA, Tugwell P, Ostelo RW. Roland-Morris Disability Questionnaire and Oswestry Disability Index: which has better measurement properties for measuring physical functioning in nonspecific low back pain? Systematic review and meta-analysis. Physical therapy. 2016 Oct 1;96(10):1620-37. Chiarotto A, Ostelo RW, Boers M, Terwee CB. A systematic review highlights the need to investigate the content validity of patient-reported outcome measures for physical functioning in patients with low back pain. Journal of clinical epidemiology. 2018 Mar 1;95:73-93 |
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| Musculoskeletal | Back pain | Spine Functional Index | SFI-25 | Australia | 2013 | To assess spine function from cervical to lumbar as a single kinetic chain. | 25 | No specific domains/dimensions identified | Yes | Gabel CP, Melloh M, Burkett B, Michener LA. The Spine Functional Index: development and clinimetric validation of a new whole-spine functional outcome measure. Spine J. 2013 Oct 25. pii: S1529-9430(13)01598-2 | No information | Unknown | Charles Gabel, Faculty of Science, Health and Education, Centre for Healthy Activities, Sport and Exercise, University of the Sunshine Coast, Sippy Downs Dve, Sippy Downs, Sunshine Coast Qld, 4556 Australia; cp.gabel@bigpond.com | http://www.adviserehab.com/wp-content/uploads/SFI-25-2015-3-Box.pdf | Yes | Wiitavaara, B., & Heiden, M. (2018). Content and psychometric evaluations of questionnaires for assessing physical function in people with low back disorders. A systematic review of the literature. Disability and Rehabilitation, 42(2), 163–172. https://doi.org/10.1080/09638288.2018.1495274 | |
| Musculoskeletal | Back pain | Tampa Scale For Kinesiophobia Short Form | TSK-11 | UK | 2005 | To assess pain-related fear in back pain patients. | 11 | No specific domains/dimensions identified | Yes | Woby SR, Roach NK, Urmston M, Watson PJ. Psychometric properties of the TSK-11: a shortened version of the Tampa Scale for Kinesiophobia. Pain. 2005 Sep 1;117(1-2):137-44. | No information | Unknown | S Woby, steve.woby@pat.nhs.uk | https://www.physiotutors.com/questionnaires/tampa-scale-11-tsk-11/ | Yes | Alpalhão V, Vaz JR, Cordeiro N, de Pezarat Correia P. Are the Cross-Culturally Adapted Versions of the Tampa Scale for Kinesiophobia 11-Item Valid, Reliable, and Responsive? A COSMIN-Informed Systematic Review of Measurement Properties. J Pain. 2024;25(10):104602. doi:10.1016/j.jpain.2024.104602 | |
| Musculoskeletal | Back pain; Spinal injuries; Chronic pain; Non-specific populations | Fear-Avoidance Belief Questionnaire | FABQ | UK | 1993 | To measure the degree to which fear-avoidant beliefs contribute to a patient's pain related to spinal injuries, musculoskeletal conditions, chronic pain, back pain, and in non-specific patient populations. | 19 | 2 | Physical activity; Work | Yes | Waddell G, Newton M, Henderson I, Somerville D, Main CJ. A Fear-Avoidance Beliefs Questionnaire (FABQ) and the role of fear-avoidance beliefs in chronic low back pain and disability. Pain. 1993 Feb;52(2):157-168 | No information | Unknown | https://www.sralab.org/rehabilitation-measures/fear-avoidance-beliefs-questionnaire | Yes | Lundberg M, Grimby-Ekman A, Verbunt J, Simmonds MJ. Pain-related fear: a critical review of the related measures. Pain Res Treat. 2011;2011:494196. doi:10.1155/2011/494196 | |
| Musculoskeletal | Back, function | Lumbar stiffness disability index | LSDI | USA | 2013 | To measure the impact of spinal stiffness on ADLs after lumbar spinal arthrodesis. | 10 | No specific domains/dimensions identified | Yes | Hart RA, Gundle KR, Pro SL, Marshall LM. Lumbar Stiffness Disability Index: pilot testing of consistency, reliability, and validity. Spine J. 2013 Feb;13(2):157-61. doi: 10.1016/j.spinee.2012.12.001. Epub 2013 Jan 19. PMID: 23337543. | No information | Unknown | Department of Orthopaedics & Rehabilitation, Oregon Health & Science University, 3181 Southwest Sam Jackson Park Rd, OP31, Portland, OR 97239, USA. Tel.: (503) 494-6406; fax: (503) 494-5050. E-mail address: sasaokar@ohsu.edu (R.A. Hart) |
Yes | Pinto-Carral A, Fernandez-Villa T, de la Torre AJ. Patient-reported mobility: a systematic review. Archives of Physical Medicine and Rehabilitation. 2016 Jul 1;97(7):1182-94 | ||
| Musculoskeletal | Chronic pain | Chronic Pain Acceptance Questionnaire | CPAQ | USA | 1992 | To quantify acceptance of pain in pain clinical populations. | 20 | 2 | Activities engagement; Pain willingness | Yes | Geisser DS. A comparison of acceptance-focused and control-focused psychological treatments in a chronic pain treatment center [Unpublished doctoral dissertation]. Reno, NV: University of Nevada; 1992 | No information | Unknown | https://www.div12.org/wp-content/uploads/2015/06/Chronic-Pain-Acceptance-Questionniare-Revised.pdf | Yes | Day MA, Lang CP, Newton-John TR, Ehde DM, Jensen MP. A content review of cognitive process measures used in pain research within adult populations. Eur J Pain. 2017;21(1):45-60. doi:10.1002/ejp.917 | |
| Musculoskeletal | Chronic pain | Chronic Pain Self-Efficacy Scale | CPSS | USA | 1995 | To measure pain self-efficacy in people with chronic musculoskeletal conditions. | 22 | 3 | Self-efficacy for pain management; Self-efficacy for physical function; Self-efficacy for coping with symptoms | Yes | Anderson KO, Dowds BN, Pelletz RE, Edwards WT, Peeters-Asdourian C. Development and initial validation of a scale to measure self-efficacy beliefs in patients with chronic pain. Pain. 1995 Oct;63(1):77-84 | No information | Unknown | Karen Anderson, Department of Anesthesiology, University of Massachusetts Medical Center, Worcester, MA 01655 USA | Yes | Porcel-Gálvez AM, Barrientos-Trigo S. Factors that Influence Coping with Chronic Noncancer Pain in European Countries: A Systematic Review of Measuring Instruments [published correction appears in Pain Manag Nurs. 2022 Feb;23(1):87. doi: 10.1016/j.pmn.2021.02.006]. Pain Manag Nurs. 2020;21(2):123-133. doi:10.1016/j.pmn.2019.06.010 | |
| Musculoskeletal | Chronic pain | Fear of Pain Questionnaire for Children | FOPQ-C | USA | 2011 | To measure the contribution of pain-related fear to pain in children. | 24 | 2 | Fear of pain; Avoidance of activity | Yes | Simons LE, Sieberg CB, Carpino E, Logan D, Berde C. The Fear of Pain Questionnaire (FOPQ): assessment of pain-related fear among children and adolescents with chronic pain. J Pain. 2011 Jun;12(6):677-86 | Yes | Unknown | PedsPainLab@stanford.edu | https://bpp.stanford.edu/measures/ | Yes | Smith NL, Smith MG, Gibson N, Imms C, Thornton AL, Harvey AR. Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties. Dev Med Child Neurol. 2023;65(3):318-328. doi:10.1111/dmcn.15410 |
| Musculoskeletal | Chronic pain | Multidimensional Symptom Index | MSI | Canada | 2018 | To capture frequency and interference of different pain-related symptoms for people with pain-related conditions, to identify people who might also have comorbid depressive disorder, or to develop a phenotype of a person's pain experience. | 20 | 6 | Number of items experienced; Mean frequency of pain; Mean interference of pain; Health valuation; MSI somatic symptoms; MSI non-somatic symptoms | Yes | Walton DM, Marsh J. The Multidimensional Symptom Index: A new patient-reported outcome for pain phenotyping, prognosis and treatment decisions. Eur J Pain. 2018 Aug;22(7):1351-1361. doi: 10.1002/ejp.1224. Epub 2018 May 21. PMID: 29635812. | No information | Unknown | https://ir.lib.uwo.ca/cgi/viewcontent.cgi?article=1082&&context=ptpub&&sei-redir=1&referer=https%253A%252F%252Fscholar.google.com%252Fscholar%253Fhl%253Den%2526as_sdt%253D0%25252C5%2526q%253D%252522Multidimensional%252BSymptom%252BIndex%252522%252BAND%252Breliability%252BOR%252Bvalidity%2526btnG%253D#search=%22Multidimensional%20Symptom%20Index%20reliability%20OR%20validity%22 | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Chronic pain | Pain Disability Index | PDI | USA | 1987 | To help patients measure the degree their daily lives are disrupted by chronic pain. | 7 | 2 | Recreational activities; Essential activities | Yes | Pollard CA. Preliminary validity study of the pain disability index. Percept Mot Skills. 1984 Dec;59(3):974 Tait RC, Pollard CA, Margolis RB, Duckro PN, Krause SJ. The Pain Disability Index: psychometric and validity data. Arch Phys Med Rehabil. 1987 Jul;68(7):438-41 Tait RC, Chibnall JT, Krause S. The Pain Disability Index: psychometric properties. Pain. 1990 Feb;40(2):171-82 |
PubliclYes available | Unknown | https://www.caltcm.org/assets/Pain-file/pain%20disability%20index.pdf | Yes | Millard RW, Beattie PF, Jones RH. A comprehensive review of questionnaires to evaluate chronic pain-related disability. Critical Reviews™ in Physical and Rehabilitation Medicine. 1997;9(1). Fennelly O, Blake C, Desmeules F, Stokes D, Cunningham C. Patient‐reported outcome measures in advanced musculoskeletal physiotherapy practice: a systematic review. Musculoskeletal Care. 2018 Mar;16(1):188-208. |
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| Musculoskeletal | Chronic pain | West Haven-Yale Multidimensional Pain Inventory | WHYMPI | USA | 1985 | To provide a brief but comprehensive assessment of the subjective experience of pain. | 52 | 3 | Pain experience; Others responses to patient's pain; Activities of daily living | Yes | Kerns RD, Turk DC, Rudy TE. The west haven-yale multidimensional pain inventory (WHYMPI). Pain. 1985 Dec 1;23(4):345-56. | No information | Unknown | https://www.sralab.org/sites/default/files/2017-07/west_haven_yale_mult… | Yes | Day MA, Lang CP, Newton‐John TR, Ehde DM, Jensen MP. A content review of cognitive process measures used in pain research within adult populations. European Journal of Pain. 2017 Jan;21(1):45-60. Bailly F, Fautrel B, Gossec L. Pain assessment in rheumatology–how can we do better? A literature review. Joint Bone Spine. 2016 Jul 1;83(4):384-8. |
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| Musculoskeletal | Elbow injury, general | Patient-Rated Elbow Evaluation | PREE | Canada | 2001 | To assess elbow pathologies. | 20 | 3 | Pain; Specific activity; Functional Disability | Yes | MacDermid JC. Outcome evaluation in patients with elbow pathology: issues in instrument development and evaluation. J Hand Ther. 2001 Apr-Jun;14(2):105-14. | Yes | Unknown | Joy C. MacDermid, BScPT, MSc, PhD, Co-director, Clinical Research Laboratory, Hand and Upper Limb Centre, St Joseph's Health Centre, P.O. Box 5777, London, Ontario, Canada N6A 4L6; jmac-derm@julian.uwo.ca | Nil | Yes | Dowrick AS, Gabbe BJ, Williamson OD, Cameron PA. Outcome instruments for the assessment of the upper extremity following trauma: a review. Injury. 2005 Apr 1;36(4):468-76. The B, Reininga IH, El Moumni M, Eygendaal D. Elbow-specific clinical rating systems: extent of established validity, reliability, and responsiveness. Journal of shoulder and elbow surgery. 2013 Oct 1;22(10):1380-94. |
| Musculoskeletal | Elbow injury, general | Patient-Rated Ulnar Nerve Evaluation | PRUNE | Canada | 2013 | To assess pain, symptoms and functional disability in patients with ulnar nerve compression at the elbow. | 20 | 4 | Pain; Sensory/motor; Specific activities; Usual activities | Yes | MacDermid JC, Grewal R. Development and validation of the patient-rated ulnar nerve evaluation. BMC Musculoskelet Disord. 2013 Apr 26;14:146. doi: 10.1186/1471-2474-14-146. PMID: 23617407; PMCID: PMC3660194. | Yes | Unknown | https://bmcmusculoskeletdisord.biomedcentral.com/articles/10.1186/1471-2474-14-146 | Yes | Dabbagh A, Saeidi S, MacDermid JC. Psychometric properties of the patient-reported outcome measures for people with ulnar nerve entrapment at the elbow: a systematic review. Physical Therapy. 2022 Oct 1;102(10):pzac103 Gallo L, Gallo M, Murphy J, Waltho D, Baxter C, Karpinski M, Mowakket S, Copeland A, Thoma A. Reporting outcomes and outcome measures in cubital tunnel syndrome: a systematic review. The Journal of Hand Surgery. 2020 Aug 1;45(8):707-28. |
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| Musculoskeletal | Elbow, surgery | Oxford Elbow Score | OES | UK | 2008 | To assess outcomes of elbow surgery. | 12 | 3 | Elbow function; Pain; Social-psychological | Yes | Dawson J, Doll H, Boller I, et al. The development and validation of a patient-reported questionnaire to assess outcomes of elbow surgery. J Bone Joint Surg Br. 2008;90(4):466-473. doi:10.1302/0301-620X.90B4.20290 | Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/the-oxford-elbow-score-oes/ | Nil | Yes | The B, Reininga IH, El Moumni M, Eygendaal D. Elbow-specific clinical rating systems: extent of established validity, reliability, and responsiveness. Journal of shoulder and elbow surgery. 2013 Oct 1;22(10):1380-94. Abbot S, Proudman S, Sim YP, Williams N. Psychometric properties of patient‐reported outcomes measures used to assess upper limb pathology: a systematic review. ANZ Journal of Surgery. 2022 Dec;92(12):3170-5. |
| Musculoskeletal | Foot and/or ankle injury | Ankle Instability Instrument | AII | USA | 2006 | To identify and assess functional ankle instability. | 12 | 3 | Severity; History; Instability | Yes | Docherty CL, Gansneder BM, Arnold BL, Hurwitz SR. Development and reliability of the ankle instability instrument. J Athl Train. 2006 Apr-Jun;41(2):154-8. PMID: 16791299; PMCID: PMC1472648. | No information | Unknown | Carrie L. Docherty, PhD, ATC, Indiana University, 2805 Smith Research Center, Bloomington, IN 47408, cdochert@indiana.edu | Nil | Yes | Cervera-Garvi P, Marchena-Rodriguez A, Lopezosa-Reca E, Diaz-Miguel S, Ortega-Avila AB. Systematic review of the methodological quality of patient-reported outcome measure for patients with chronic ankle instability. Clin Rehabil. 2023;37(10):1332-1346. doi:10.1177/02692155231166217 |
| Musculoskeletal | Foot and/or ankle injury | Cumberland Ankle Instability Tool | CAIT | Australia | 2006 | To assess functional ankle instability and grade the severity of the instability. | 9 | No specific domains/dimensions identified | Yes | Hiller CE, Refshauge KM, Bundy AC, Herbert RD, Kilbreath SL. The Cumberland ankle instability tool: a report of validity and reliability testing. Arch Phys Med Rehabil. 2006 Sep;87(9):1235-41. | Yes | Unknown | orthotoolkit@gmail.com | https://orthotoolkit.com/cait/ | Yes | Cervera-Garvi P, Marchena-Rodriguez A, Lopezosa-Reca E, Diaz-Miguel S, Ortega-Avila AB. Systematic review of the methodological quality of patient-reported outcome measure for patients with chronic ankle instability. Clin Rehabil. 2023;37(10):1332-1346. doi:10.1177/02692155231166217 | |
| Musculoskeletal | Foot and/or ankle injury | Foot and Ankle Ability Measure Sports | FAAM S | USA | 2005 | To evaluate changes in self-reported physical function in sporting activities for individuals with leg, ankle, and foot musculoskeletal disorders. | 8 | No specific domains/dimensions identified | Yes | Martin RL, Irrgang JJ, Burdett RG, Conti SF, Van Swearingen JM. Evidence of validity for the Foot and Ankle Ability Measure (FAAM). Foot Ankle Int. 2005 Nov;26(11):968-83 | No information | Unknown | https://www.sralab.org/rehabilitation-measures/foot-and-ankle-ability-measures | Yes | Martin RL, Irrgang JJ. A survey of self-reported outcome instruments for the foot and ankle. J Orthop Sports Phys Ther. 2007;37(2):72-84. doi:10.2519/jospt.2007.2403 | ||
| Musculoskeletal | Foot and/or ankle injury | Identification of Functional Ankle Instability | IdFAI | USA | 2012 | To determine an individual’s perceived ankle stability status. | 10 | No specific domains/dimensions identified | Yes | Simon J, Donahue M, Docherty C. Development of the identification of functional ankle instability (IdFAI). Foot & Ankle International. 2012 Sep;33(9):755-63. Gurav RS, Ganu SS, Panhale VP. Reliability of the Identification of Functional Ankle Instability (IdFAI) Scale Across Different Age Groups in Adults. N Am J Med Sci. 2014 Oct;6(10):516-8. doi: 10.4103/1947-2714.143283. PMID: 25489564; PMCID: PMC4215489. |
No information | Unknown | Carrie L. Docherty, PhD, ATC, FNATA, Department of Kinesiology, Indiana University, 1025 E. 7th Street, Bloomington, IN 47404; e-mail: cdochert@indiana.edu | https://www.researchgate.net/publication/259694894_Reliability_and_Validity_of_a_New_Questionnaire_Created_to_Establish_the_Presence_of_Functional_Ankle_Instability_The_IdFAI/figures?lo=1 | Yes | Cervera-Garvi P, Marchena-Rodriguez A, Lopezosa-Reca E, Diaz-Miguel S, Ortega-Avila AB. Systematic review of the methodological quality of patient-reported outcome measure for patients with chronic ankle instability. Clin Rehabil. 2023 Oct;37(10):1332-1346. doi: 10.1177/02692155231166217. Epub 2023 Mar 28. PMID: 36987581. | |
| Musculoskeletal | Foot and/or ankle injury | Manchester Foot Pain Disability Index | MFPDI | UK | 2000 | To assess the impact of painful foot conditions in community and clinical populations. | 19 | 3 | Functional limitation; Pain; Personal appearance | Yes | Garrow AP, Papageorgiou AC, Silman AJ, et al. Development and validation of a questionnaire to assess disabling foot pain. Pain. 2000 Mar;85(1-2):107-13 | Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/manchester-foot-pain-disab… | Nil | Yes | "Jia Y, Huang H, Gagnier JJ. A systematic review of measurement properties of patient-reported outcome measures for use in patients with foot or ankle diseases. Quality of Life Research. 2017 Aug;26:1969-2010. Schrier JC, Palmen LN, Verheyen CC, Jansen J, Koëter S. Patient-reported outcome measures in hallux valgus surgery. A review of literature. Foot and Ankle Surgery. 2015 Mar 1;21(1):11-5." |
| Musculoskeletal | Foot and/or ankle injury | Manchester-Oxford Foot Questionnaire | MOXFQ | UK | 2006 | To assess the outcomes of foot surgery. | 16 | 3 | Walking/standing; Pain; Social interaction | Yes | Dawson J, Coffey J, Doll H, Lavis G, Cooke P, Herron M, Jenkinson C. A patient-based questionnaire to assess outcomes of foot surgery: validation in the context of surgery for hallux valgus. Qual Life Res. 2006 Sep;15(7):1211-22 | Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/manchester-oxford-foot-que… | Nil | Yes | Jia Y, Huang H, Gagnier JJ. A systematic review of measurement properties of patient-reported outcome measures for use in patients with foot or ankle diseases. Quality of Life Research. 2017 Aug;26:1969-2010. Schrier JC, Palmen LN, Verheyen CC, Jansen J, Koëter S. Patient-reported outcome measures in hallux valgus surgery. A review of literature. Foot and Ankle Surgery. 2015 Mar 1;21(1):11-5. |
| Musculoskeletal | Foot and/or ankle injury | Oxford Foot and Ankle Questionnaire for Children | OxAFQ-C | UK | 2008 | To measure subjective well-being for child patients affected by foot and ankle conditions. | 15 | 3 | Physical; School and Play; Emotional | Yes | Morris C, Doll HA, Wainwright A, Theologis T, Fitzpatrick R. The Oxford ankle foot questionnaire for children: scaling, reliability and validity. J Bone Joint Surg Br. 2008 Nov;90(11):1451-6 | Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/the-oxford-ankle-foot-ques… | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Foot and/or ankle injury | TENDINopathy Severity assessment-Achilles | TENDINS-A | Australia | 2024 | To assess the severity of Achilles tendinopathy. | 13 | 3 | Pain; Symptoms; Function | Yes | Murphy MC, Newsham-West R, Cook J, Chimenti RL, de Vos RJ, Maffulli N, Malliaras P, Mkumbuzi N, Purdam C, Vosseller JT, Rio EK. TENDINopathy Severity Assessment - Achilles (TENDINS-A): Development and Content Validity Assessment of a New Patient-Reported Outcome Measure for Achilles Tendinopathy. J Orthop Sports Phys Ther. 2023 Nov;54(1):1-16. doi: 10.2519/jospt.2023.11964. PMID: 37615161. | Yes | Unknown | Dr Myles Calder Murphy, Edith Cowan University, Joondalup, WA 6027, Australia; m.murphy@ecu.edu.au | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Foot and/or ankle injury, Achilles tendon | Achilles tendon Total Rupture Score | ATRS | Sweden | 2007 | To assess a patient's perceived symptoms and impact on ADLs of acute Achilles tendon rupture. | 10 | 2 | Symptoms; Physical activity | Yes | Nilsson-Helander K, Thomeé R, Silbernagel KG, Thomeé P, Faxén E, Eriksson BI, Karlsson J. The Achilles tendon Total Rupture Score (ATRS): development and validation. Am J Sports Med. 2007 Mar;35(3):421-6 | No information | Unknown | https://www.physio-pedia.com/Achilles_Tendon_Total_Rupture_Score | Yes | Kearney RS, Achten J, Lamb SE, Plant C, Costa ML. A systematic review of patient-reported outcome measures used to assess Achilles tendon rupture management: what's being used and should we be using it?. Br J Sports Med. 2012;46(16):1102-1109. doi:10.1136/bjsports-2011-090497 | |
| Musculoskeletal | Foot and/or ankle injury, Achilles tendon | Victorian Institute of Sports Assessment-Achilles questionnaire | VISA-A | Canada | 2001 | To measure patient-reported severity of Achilles tendinopathy. | 8 | 3 | Pain; Function in daily living; Sport activities | Yes | Robinson JM, Cook JL, Purdam C, Visentini PJ, Ross J, Maffulli N, Taunton JE, Khan KM. The VISA-A questionnaire: a valid and reliable index of the clinical severity of Achilles tendinopathy. British journal of sports medicine. 2001 Oct 1;35(5):335-41. Iversen JV, Bartels EM, Langberg H. The victorian institute of sports assessment - achilles questionnaire (visa-a) - a reliable tool for measuring achilles tendinopathy. Int J Sports Phys Ther. 2012 Feb;7(1):76-84. PMID: 22319681; PMCID: PMC3273883. |
Yes | Unknown | Jonas Vestergård Iversen, MD, Bispebjerg Hospital, Bispebjerg Bakke 23, DK-2400 Copenhagen NV, Denmark (DK), Email: jive0018@bbh.regionh.dk | Nil | Yes | Murphy M, Rio E, Debenham J, Docking S, Travers M, Gibson W. Evaluating the progress of mid-portion Achilles tendinopathy during rehabilitation: a review of outcome measures for self-reported pain and function. International journal of sports physical therapy. 2018 Apr;13(2):283 |
| Musculoskeletal | Hand and wrist injuries, Carpal tunnel | Brigham and Women's Hospital Carpal Tunnel Syndrome Questionnaire or Boston Carpal Tunnel Syndrome Questionnaire | BCTSQ | USA | 1993 | To assess patient perceptions of Carpal Tunnel-related symptoms and impact on function. | 19 | 2 | Symptoms; Functional status | Yes | Levine DW, Simmons BP, Koris MJ, Daltroy LH, Hohl GG, Fossel AH, Katz JN. A self-administered questionnaire for the assessment of severity of symptoms and functional status in carpal tunnel syndrome. J Bone Joint Surg Am. 1993 Nov;75(11):1585-92 | Yes | Unknown | Copyright information: © Brigham and Women’s Hospital; D. W. Levine, Department of Orthopedic Surgery, Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts 02115. | Nil | Yes | Dabbagh A, Saeidi S, MacDermid JC. Psychometric Properties of the Patient-Reported Outcome Measures for People With Ulnar Nerve Entrapment at the Elbow: A Systematic Review. Phys Ther. 2022;102(10):pzac103. doi:10.1093/ptj/pzac103 |
| Musculoskeletal | Hand and wrist injuries, Dupuytren's | Southampton Dupuytren's Scoring Scheme | SDSS | UK | 2013 | To quantify the disability caused by Dupuytren's disease. | 5 | No specific domains/dimensions identified | Yes | Mohan A, Vadher J, Ismail H, Warwick D. The Southampton Dupuytren's Scoring Scheme. J Plast Surg Hand Surg. 2014 Feb;48(1):28-33. doi: 10.3109/2000656X.2013.794349. Epub 2013 May 13. PMID: 24428161. | No information | Unknown | Arvind Mohan, Orthopaedic Registrar, Department of Orthopaedics, Southampton University Hospitals, Southampton, UK; davidwarwick@me.com | Nil | Yes | Bradet-Levesque I, Audet J, Roy JS, Flamand VH. Measuring functional outcome in Dupuytren's disease: A systematic review of patient-reported outcome measures. Journal of Hand Therapy. 2022 Oct 1;35(4):613-27. | |
| Musculoskeletal | Hand and wrist injuries, general | HAND-Q | HAND-Q | Australia | 2019 | To measure outcomes important to patients with any type of congenital or acquired condition affecting the hands. | 133 | 4 | Appearance; Health-related quality of life; Experience of care; Treatment | Yes | Sierakowski KL, Dean NR, Pusic AL, Bain G, Cano S, Griffin PA, Klassen AF. International multiphase mixed methods study to develop a cross-cultural patientreported outcome and experience measure for hand conditions (HAND-Q). BMJ Open. 2019 Mar 20;9(3):e025822 | Yes | Unknown | https://qportfolio.org/hand-q/ | Nil | ||
| Musculoskeletal | Hip replacement | Oxford Hip Score | OHS | UK | 1996 | To assess outcomes of hip arthroplasty (primary and revision). | 12 | No specific domains/dimensions identified | Yes | Dawson J, Fitzpatrick R, Carr A, Murray D. Questionnaire on the perceptions of patients about total hip replacement. The Journal of Bone & Joint Surgery British Volume. 1996 Mar 1;78(2):185-90. | Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/oxford-hip-score-ohs/ | https://www.orthopaedicswa.com.au/resources/downloads/3-OrthopaedicsWA-hip-survey_RE.pdf | Yes | Alviar MJ, Olver J, Brand C, Tropea J, Hale T, Pirpiris M, Khan F. Do patient-reported outcome measures in hip and knee arthroplasty rehabilitation have robust measurement attributes? A systematic review. Journal of rehabilitation medicine. 2011 Jun 1;43(7):572-83. Longo UG, Ciuffreda M, Candela V, Berton A, Maffulli N, Denaro V. Hip scores: a current concept review. British Medical Bulletin. 2019 Sep 19;131(1):81-96. |
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| Musculoskeletal | Hip replacement | Patient-Specific Index | PASI | Canada | 2000 | To assess the outcome of total hip arthroplasty. | 48 | No specific domains/dimensions identified | Yes | Wright JG, Young NL, Waddell JP. The reliability and validity of the self-reported Patient-Specific Index for total hip arthroplasty. The Journal of Bone & Joint Surgery 2000;82-A(6):829-837 | No information | Unknown | J. G. Wright: jgwright@sickkids.on.ca | Nil | Yes | Gagnier JJ, Huang H, Mullins M, Marinac-Dabić D, Ghambaryan A, Eloff B, Mirza F, Bayona M. Measurement properties of patient-reported outcome measures used in patients undergoing total hip arthroplasty: a systematic review. JBJS reviews. 2018 Jan 1;6(1):e2. Thorborg K, Roos EM, Bartels EM, Petersen J, Hölmich P. Validity, reliability and responsiveness of patient-reported outcome questionnaires when assessing hip and groin disability: a systematic review. British journal of sports medicine. 2010 Dec 1;44(16):1186-96. |
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| Musculoskeletal | Hip replacement; Knee replacement | Forgotten Joint Score | FJS | Switzerland; Austria | 2012 | To measure the a patient's ability to forget an artificial joint in everyday life after total knee or hip arthroplasty. | 12 | No specific domains/dimensions identified | Yes | Behrend H, Giesinger K, Giesinger JM, Kuster MS. The "forgotten joint" as the ultimate goal in joint arthroplasty: validation of a new patient-reported outcome measure. J Arthroplasty. 2012 Mar;27(3):430-436 | Yes | Unknown | Henrik Behrend, MD, Department of Orthopaedic Surgery, Kantonsspital St Gallen, 9007 St Gallen, Switzerland. | Nil | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Hip replacement; Knee replacement | Joint Awareness Score | JAS | USA | 2023 | To measure the a patient's ability to forget an artificial joint in everyday life after total knee or hip arthroplasty. | 6 | No specific domains/dimensions identified | Yes | Porter MA, Johnston MG, Kogan C, Gray CG, Eppich KE, Scott DF. The Joint Awareness Score: A Shortened, Simplified, Improved Alternative to the Forgotten Joint Score. Arthroplast Today. 2023 Oct 27;24:101239. doi: 10.1016/j.artd.2023.101239. PMID: 37964917; PMCID: PMC10641080. | No information | Unknown | Spokane Joint Replacement Center, Inc., 785 E. Holland Ave., Spokane, WA 99218, USA. Tel.: +1 509 466 6393. dfscott@mac.com | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10641080/table/tbl1/?report=objectonly | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Hip replacement; Knee replacement | Lower Extremity Activity Scale | LEAS | USA | 2005 | To assess actual activity levels in patients after lower-extremity arthroplasty. | 1 | No specific domains/dimensions identified | Yes | Saleh KJ, Mulhall KJ, Bershadsky B, Ghomrawi HM, White LE, Buyea CM, Krackow KA. Development and validation of a lower-extremity activity scale. Use for patients treated with revision total knee arthroplasty. J Bone Joint Surg Am. 2005 Sep;87(9):1985-94. doi: 10.2106/JBJS.D.02564. PMID: 16140813. | No information | Unknown | Department of Orthopaedic Surgery, University of Virginia, 400 Ray C. Hunt Drive, Suite 330, Charlottesville, VA 22903. E-mail address for K.J. Saleh: kjs3x@hscmail.mcc.virginia.edu | Nil | Yes | Terwee CB, Bouwmeester W, Van Elsland SL, De Vet HC, Dekker J. Instruments to assess physical activity in patients with osteoarthritis of the hip or knee: a systematic review of measurement properties. Osteoarthritis and cartilage. 2011 Jun 1;19(6):620-33. Sabah SA, Hedge EA, Abram SG, Alvand A, Price AJ, Hopewell S. Patient-reported outcome measures following revision knee replacement: a review of PROM instrument utilisation and measurement properties using the COSMIN checklist. BMJ open. 2021 Oct 1;11(10):e046169 |
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| Musculoskeletal | Hip replacement; Knee replacement | Lower Extremity Functional Scale | LEFS | USA | 1999 | To evaluate the functional impairment of a patient with a disorder of one or both lower extremities. | 20 | No specific domains/dimensions identified | Yes | Binkley JM, Stratford PW, Lott SA, Riddle DL. The lower extremity functional scale (LEFS): scale development, measurement properties, and clinical application. Phys Ther 1999;79:371-383. | No information | Unknown | https://orthotoolkit.com/lefs/ | Yes | Beauchamp M, Hao Q, Kuspinar A, Alder G, Makino K, Nouredanesh M, Zhao Y, Mikton C, Thiyagarajan JA, Diaz T, Raina P. Measures of perceived mobility ability in community-dwelling older adults: a systematic review of psychometric properties. Age and Ageing. 2023 Oct;52(Supplement_4):iv100-11 Ashford S, Brown S, Turner-Stokes L. Systematic review of patient-reported outcome measures (PROMS) for functional performance in the lower limb. Journal of rehabilitation medicine. 2015;47(1):9-17. |
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| Musculoskeletal | Hip replacement; Knee replacement | Oxford Arthroplasty Early Change Score | OACS | UK | 2020 | To assess change, recovery pathways, and interventions during the first six weeks following surgery (hip or knee arthroplasty). | 14 | No specific domains/dimensions identified | Yes | Strickland LH, Kelly L, Hamilton TW, Murray DW, Pandit HG, Jenkinson C. Early recovery following lower limb arthroplasty: Qualitative interviews with patients undergoing elective hip and knee replacement surgery. Initial phase in the development of a patient-reported outcome measure. J Clin Nurs. 2018 Jul;27(13-14):2598-2608 Strickland LH, Murray DW, Pandit HG, Jenkinson C. Development of a patient-reported outcome measure (PROM) and change measure for use in early recovery following hip or knee replacement. Journal of Patient-Reported Outcomes. 2020 Dec;4:1-7. |
Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/oxford-arthroplasty-early-…. | Nil | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Hip replacement; Knee replacement | Oxford Arthroplasty Early Recovery Score | OARS | UK | 2020 | To assess recovery pathways and interventions in hip or knee arthroplasty. | 14 | 4 | Pain; Nausea and feeling unwell; Fatigue and sleep; Improving function and mobility | Yes | Strickland LH, Kelly L, Hamilton TW, Murray DW, Pandit HG, Jenkinson C. Early recovery following lower limb arthroplasty: Qualitative interviews with patients undergoing elective hip and knee replacement surgery. Initial phase in the development of a patient-reported outcome measure. J Clin Nurs. 2018 Jul;27(13-14):2598-2608 See also: Strickland LH, Murray DW, Pandit HG, Jenkinson C. Development of a patient-reported outcome measure (PROM) and change measure for use in early recovery following hip or knee replacement. Journal of Patient-Reported Outcomes. 2020 Dec;4:1-7. | Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/oxford-arthroplasty-early-…. | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Hip, general | Copenhagen Hip and Groin Outcome Score | HAGOS | Denmark | 2011 | To assess symptoms, activity limitations, participation restrictions and quality of life in physically active, young to middle-aged patients with long-standing hip and/or groin pain. | 37 | 6 | Pain; Symptoms; Physical Function in ADLS; Physical Function in Sports; Participation in physical activities; Hip/groin related quality of life | Yes | Thorborg K, Hölmich P, Christensen R, Petersen J, Roos EM. The Copenhagen Hip and Groin Outcome Score (HAGOS): development and validation according to the COSMIN checklist. Br J Sports Med. 2011 May;45(6):478-91 | PubliclYes available | Unknown | https://www.physiotutors.com/questionnaires/hagos/ | Yes | Impellizzeri FM, Jones DM, Griffin D, et al Patient-reported outcome measures for hip-related pain: a review of the available evidence and a consensus statement from the International Hip-related Pain Research Network, Zurich 2018 British Journal of Sports Medicine 2020;54:848-857. | |
| Musculoskeletal | Hip, general | International Hip Outcome Tool-33 | iHOT-33 | Canada | 2012 | To measure health-related quality of life in young, active patients with hip disorders. | 33 | 4 | Symptoms C Functional limitations; Sports and Recreational Activities; Job-related concerns; Social, Emotional, and Lifestyle concerns | Yes | Mohtadi NG, Griffin DR, Pedersen ME, Chan D, Safran MR, Parsons N, Sekiya JK, Kelly BT, Werle JR, Leunig M, McCarthy JC, Martin HD, Byrd JW, Philippon MJ, Martin RL, Guanche CA, Clohisy JC, Sampson TG, Kocher MS, Larson CM; Multicenter Arthroscopy of the Hip Outcomes Research Network. The Development and validation of a self-administered quality-of-life outcome measure for young, active patients with symptomatic hip disease: the International Hip Outcome Tool (iHOT-33). Arthroscopy. 2012 May;28(5):595-605; quiz 606-10.e1 | Yes | Unknown | Licencing information: Oxford Hip Score © Oxford University Innovation Limited, 1996. All rights reserved. | https://www.sralab.org/rehabilitation-measures/international-hip-outcome-tool | Yes | Ramisetty N, Kwon Y, Mohtadi N. Patient-reported outcome measures for hip preservation surgery-a systematic review of the literature. J Hip Preserv Surg. 2015 Feb 6;2(1):15-27. doi: 10.1093/jhps/hnv002. PMID: 27011811; PMCID: PMC4718480. |
| Musculoskeletal | Hip, general | Short Version of the International Hip Outcome Tool | iHOT-12 | USA; UK; Canada | 2012 | To assess quality of life in young, active patients with hip disorders. | 12 | 4 | Symptoms and functional limitations; Sports and recreational activities; Job-related concerns; Social, emotional, and lifestyle | Yes | Griffin DR, Parsons N, Mohtadi NG, Safran MR; Multicenter Arthroscopy of the Hip Outcomes Research Network. A short version of the International Hip Outcome Tool (iHOT-12) for use in routine clinical practice. Arthroscopy. 2012 May;28(5):611-6; quiz 616-8 | No information | Unknown | https://www.sralab.org/rehabilitation-measures/international-hip-outcome-tool | Yes | Ueland TE, Disantis A, Carreira DS, Martin RL. Patient-reported outcome measures and clinically important outcome values in hip arthroscopy: a systematic review. JBJS reviews. 2021 Jan 1;9(1):e20. Thorborg K, Tijssen M, Habets B, Bartels EM, Roos EM, Kemp J, Crossley KM, Hölmich P. Patient-Reported Outcome (PRO) questionnaires for young to middle-aged adults with hip and groin disability: a systematic review of the clinimetric evidence. British journal of sports medicine. 2015 Jun 1;49(12):812- |
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| Musculoskeletal | Knee injuries | International Knee Documentation Committee Subjective Knee Evaluation Form | IKDC SKF | USA | 2006 | To detect changes in symptoms, function, and sports activities in patients with various knee conditions. | 10 | 3 | Symptoms; Athletic activity; Knee function | Yes | Irrgang JJ, Anderson AF, Boland AL, Harner CD, Neyret P, et al. Responsiveness of the International Knee Documentation Committee Subjective Knee Form. Am J Sports Med. 2006; 34(10):1567-1573 | Yes | Unknown | Licencing information: The American Orthopaedic Society of Sports Medicine (AOSSM) | https://www.physiotutors.com/questionnaires/international-knee-documentation-committee-ikdc/ | Yes | Hansen CF, Jensen J, Odgaard A, Siersma V, Comins JD, Brodersen J, Krogsgaard MR. Four of five frequently used orthopedic PROMs possess inadequate content validity: a COSMIN evaluation of the mHHS, HAGOS, IKDC-SKF, KOOS and KNEES-ACL. Knee Surg Sports Traumatol Arthrosc. 2022 Nov;30(11):3602-3615. doi: 10.1007/s00167-021-06761-y. Epub 2021 Oct 7. PMID: 34618175. |
| Musculoskeletal | Knee injuries | Knee injury and Osteoarthritis Outcome Score - Child version | KOOS-Child | USA; Sweden | 2012 | To assess child's opinion about their knee injury. | 39 | 5 | Pain; Symptoms; Activities of daily living; Function in sports and play; Knee related quality of life | Yes | Ortqvist M, Iversen MD, Janarv PM, Broström EW, Roos EM. Psychometric properties of the Knee injury and Osteoarthritis Outcome Score for Children (KOOS-Child) in children with knee disorders. Br J Sports Med. 2014 Oct;48(19):1437-46 Örtqvist M, Roos EM, Broström EW, Janarv PM, Iversen MD. Development of the knee injury and osteoarthritis outcome score for children (KOOS-child) comprehensibility and content validity. Acta orthopaedica. 2012 Dec 1;83(6):666-73. |
Yes | Yes, fees may apply | https://eprovide.mapi-trust.org/instruments/knee-injury-and-osteoarthri… | Nil | Yes | Suryavanshi JR, Goto R, Jivanelli B, PRiSM Outcomes Measures Research Interest Group, Aberdeen J, Duer T, Lam KC, Franklin CC, MacDonald J, Shea KG, Fabricant PD. Age-appropriate pediatric sports patient-reported outcome measures and their psychometric properties: a systematic review. The American Journal of Sports Medicine. 2019 Nov;47(13):3270-6. |
| Musculoskeletal | Knee injuries | Marx activity rating scale | MARS | USA | 2001 | To assess the frequency and type of functional activities that are associated with high-level knee function in young athletes. | 4 | No specific domains/dimensions identified | Yes | Cameron KL, Peck KY, Thompson BS, Svoboda SJ, Owens BD, Marshall SW. Reference Values for the Marx Activity Rating Scale in a Young Athletic Population: History of Knee Ligament Injury Is Associated With Higher Scores. Sports Health. 2015 Sep-Oct;7(5):403-8. doi: 10.1177/1941738115576121. Epub 2015 Mar 6. PMID: 26502414; PMCID: PMC4547111. Myklebust G, Holm I, Maehlum S, Engebretsen L, Bahr R. Clinical, functional, and radiologic outcome in team handball players 6 to 11 years after anterior cruciate ligament injury: a follow-up study. Am J Sports Med. 2003;31:981-989 |
No information | Unknown | Kenneth Cameron, kenneth.l.cameron.civ@mail.mil | https://orthotoolkit.com/marx/ | Yes | Gagnier JJ, Shen Y, Huang H. Psychometric properties of patient-reported outcome measures for use in patients with anterior cruciate ligament injuries: a systematic review. JBJS reviews. 2018 Apr 1;6(4):e5. Wang D, Jones MH, Khair MM, Miniaci A. Patient-reported outcome measures for the knee. The journal of knee surgery. 2010 Dec;23(03):137-51. |
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| Musculoskeletal | Knee injuries | Tegner Activity Scale | TAS | Sweden | 1985 | To determine the level of activity prior to injury and post knee ligament injury. | 1 | No specific domains/dimensions identified | Yes | Tegner YE, Lysholm JA. Rating systems in the evaluation of knee ligament injuries. Clinical Orthopaedics and Related Research (1976-2007). 1985 Sep 1;198:42-9. | No information | Unknown | Yelverton Tegner, Sports and Trauma Research Group, Department of Orthopaedic Surgery, University Hospital, Linköping, Sweden | Nil | Yes | Gagnier JJ, Mullins M, Huang H, Marinac-Dabic D, Ghambaryan A, Eloff B, Mirza F, Bayona M. A systematic review of measurement properties of patient-reported outcome measures used in patients undergoing total knee arthroplasty. The Journal of arthroplasty. 2017 May 1;32(5):1688-97. | |
| Musculoskeletal | Knee replacement | Oxford Knee Score | OKS | UK | 1998 | To assess outcomes of knee arthroplasty, pharmacological treatments, post osteotomies, following rehabilitation or with fractures. | 12 | No specific domains/dimensions identified | Yes | Dawson J, Fitzpatrick R, Murray D, Carr A. Questionnaire on the perceptions of patients about total knee replacement. The Journal of Bone & Joint Surgery British Volume. 1998 Jan 1;80(1):63-9. | Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/oxford-knee-score-oks/ | http://www.orthopaedicscore.com/scorepages/oxford_knee_score.html | Yes | Gagnier JJ, Mullins M, Huang H, Marinac-Dabic D, Ghambaryan A, Eloff B, Mirza F, Bayona M. A systematic review of measurement properties of patient-reported outcome measures used in patients undergoing total knee arthroplasty. The Journal of arthroplasty. 2017 May 1;32(5):1688-97 Chamorro-Moriana G, Perez-Cabezas V, Espuny-Ruiz F, Torres-Enamorado D, Ridao-Fernández C. Assessing knee functionality: Systematic review of validated outcome measures. Annals of Physical and Rehabilitation Medicine. 2022 Nov 1;65(6):101608 |
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| Musculoskeletal | Knee replacement | Patient's knee implant performance | PKIP | USA | 2018 | To assess patient experiences before and after primary total knee arthroplasty. | 24 | 4 | Confidence; Stability; Modify activities; Satisfaction | Yes | Coles T, Williams V, Dwyer K, Mordin M. Psychometric Evaluation of the Patient's Knee Implant Performance Questionnaire. Value Health. 2018 Nov;21(11):1305-1312. doi: 10.1016/j.jval.2018.05.006. Epub 2018 Jun 30. Erratum in: Value Health. 2024 Jun;27(6):820. doi: 10.1016/j.jval.2024.05.001. PMID: 30442278. | No information | Unknown | Theresa Coles PhD, RTI Health Solutions, Research Triangle Park, NC, USA, vwilliams@rti.org | Yes | Gagnier JJ, Mullins M, Huang H, Marinac-Dabic D, Ghambaryan A, Eloff B, Mirza F, Bayona M. A systematic review of measurement properties of patient-reported outcome measures used in patients undergoing total knee arthroplasty. The Journal of arthroplasty. 2017 May 1;32(5):1688-97 | |
| Musculoskeletal | Knee, Anterior cruciate ligament | ACL-Return to Sport after Injury Scale | ACL-RSI | USA | 2008 | To assess the psychological preparedness of people aiming to return to sport after a surgical ACL reconstruction. | 12 | 3 | Emotions; Confidence in Performance; Risk Appraisal | Yes | Webster KE, Feller JA. Development and validation of a short version of the anterior cruciate ligament return to sport after injury (ACL-RSI) scale. Orthopaedic journal of sports medicine. 2018 Apr 2;6(4):2325967118763763. | No information | Unknown | https://orthotoolkit.com/acl-rsi/ | Yes | Gagnier JJ, Shen Y, Huang H. Psychometric Properties of Patient-Reported Outcome Measures for Use in Patients with Anterior Cruciate Ligament Injuries: A Systematic Review. JBJS Rev. 2018;6(4):e5. doi:10.2106/JBJS.RVW.17.00114 | |
| Musculoskeletal | Knee, anterior cruciate ligament | Knee Injury And Osteoarthritis Outcome Score | KOOS | USA; Sweden | 1998 | To assess knee injury and osteoarthritis. | 42 | 5 | Pain; Symptoms; ADL Function; Sport and Recreation Function; Knee-related QoL | Yes | Roos EM, Roos HP, Lohmander LS, Ekdahl C, Beynnon BD. Knee Injury and Osteoarthritis Outcome Score (KOOS)—development of a self-administered outcome measure. Journal of Orthopaedic & Sports Physical Therapy. 1998 Aug;28(2):88-96. Roos EM, Lohmander LS. The Knee injury and Osteoarthritis Outcome Score (KOOS): from joint injury to osteoarthritis. Health and quality of life outcomes. 2003 Dec;1:1-8. |
PubliclYes available | Unknown | https://www.koos.nu/ | https://www.worksafe.qld.gov.au/__data/assets/pdf_file/0022/24097/knee-… | Yes | Sabah SA, Hedge EA, Abram SG, Alvand A, Price AJ, Hopewell S. Patient-reported outcome measures following revision knee replacement: a review of PROM instrument utilisation and measurement properties using the COSMIN checklist. BMJ open. 2021 Oct 1;11(10):e046169. Hansen CF, Jensen J, Odgaard A, Siersma V, Comins JD, Brodersen J, Krogsgaard MR. Four of five frequently used orthopedic PROMs possess inadequate content validity: a COSMIN evaluation of the mHHS, HAGOS, IKDC‐SKF, KOOS and KNEES‐ACL. Knee Surgery, Sports Traumatology, Arthroscopy. 2022 Nov;30(11):3602-15. |
| Musculoskeletal | Lower limb injury | University of Wisconsin Running Injury and Recovery Index | UWRI | USA | 2019 | To assess longitudinal change in running ability after running-related injury (RRI) for clinical practice and research applications. | 9 | 2 | Running progression; Symptom surveillance | Yes | Nelson EO, Ryan M, AufderHeide E, Heiderscheit B. Development of the University of Wisconsin Running Injury and Recovery Index. J Orthop Sports Phys Ther. 2019 Oct;49(10):751-760. doi: 10.2519/jospt.2019.8868. Epub 2019 Aug 3. PMID: 31378123; PMCID: PMC7060789. | Yes | Unknown | Dr Bryan Heiderscheit, University of Wisconsin, School of Medicine and Public Health, Department of Orthopedics and Rehabilitation, 1685 Highland Avenue, MFCB 6136, Madison, WI 53705. heiderscheit@ortho.wisc.edu | https://stadiasportsmedicine.com/pdf/outcomes/Running.pdf | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Lower limb, general | Dance Functional Outcome Survey | DFOS | USA | 2019 | To assess dance-specific function in ballet, modern, and contemporary dancers. | 15 | 2 | General performance; Technique specific | Yes | Bronner S, Chodock E, Urbano IE, Smith T. Psychometric properties of the dance functional outcome survey (DFOS): reliability, validity, and responsiveness. journal of orthopaedic & sports physical therapy. 2019 Feb;49(2):64-79. | PubliclYes available | Unknown | https://www.sralab.org/rehabilitation-measures/dance-functional-outcome-survey | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Lower limb, general | Lower Limb Functional Index | LLFI | Australia; USA | 2012 | To assess functional status in patients with lower-limb conditions. | 25 | No specific domains/dimensions identified | Yes | Gabel CP, Melloh M, Burkett B, Michener LA. Lower limb functional index: development and clinimetric properties. Phys Ther. 2012 Jan;92(1):98-110 | Yes | Unknown | C.P. Gabel, MSc, Faculty of Science, Health and Education, Centre for Healthy Activities, Sport and Exercise, University of the Sunshine Coast, PO Box 760, Coolum Beach, Queensland, Aus- tralia 4573. Address all correspon- dence to Mr Gabel at: cp.gabel@ bigpond.com. | Nil | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Musculoskeletal function, general | Short Musculoskeletal Functional Assessment | SMFA | USA | 1999 | To assess functional status of patients who have musculoskeletal disorders and to evaluate how bothered they are by functional problems. | 46 | 2 | Dysfunction; Bother | Yes | Swiontkowski MF, Engelberg R, Martin DP, Agel J. Short musculoskeletal function assessment questionnaire: validity, reliability, and responsiveness. J Bone Joint Surg Am. 1999 Sep;81(9):1245-60 | Yes | Unknown | https://med.umn.edu/ortho/research/project-resources | https://med.umn.edu/ortho/research/project-resources | Yes | Salerno DF, Copley-Merriman C, Taylor TN, Shinogle J, Schulz RM. A review of functional status measures for workers with upper extremity disorders. Occupational and environmental medicine. 2002 Oct 1;59(10):664-70 Alviar MJ, Olver J, Brand C, Tropea J, Hale T, Pirpiris M, Khan F. Do patient-reported outcome measures in hip and knee arthroplasty rehabilitation have robust measurement attributes? A systematic review. Journal of rehabilitation medicine. 2011 Jun 1;43(7):572-83. |
| Musculoskeletal | Musculoskeletal pain, general | Central Sensitization Inventory | CSI | USA | 2012 | To identify the key symptoms associated with Central Sensitization Syndromes and quantify the degree of these symptoms in patients with chronic pain. | 35 | 2 | Symptoms; Diagnoses | Yes | Mayer TG, Neblett R, Cohen H. The development and psychometric validation of the central sensitization inventory. Pain Pract. 2012 Apr;12(4):276-85 | No information | Unknown | https://www.pridedallas.com/wp-content/uploads/2016/04/csi_english.pdf | Yes | Schuttert I, Timmerman H, Petersen KK, McPhee ME, Arendt-Nielsen L, Reneman MF, Wolff AP. The Definition, Assessment, and Prevalence of (Human Assumed) Central Sensitisation in Patients with Chronic Low Back Pain: A Systematic Review. Journal of Clinical Medicine. 2021; 10(24):5931. https://doi.org/10.3390/jcm10245931 | |
| Musculoskeletal | Musculoskeletal, general | Disablement In The Physically Active | DPA | USA | 2010 | To measure impairments, functional limitations, health-related quality of life, and disability, after injury in the physically active. | 16 | 4 | Impairments; Functional limitations; Disability; Quality of Life | Yes | Vela LI, Denegar CR. The disablement in the physically active scale, part II: the psychometric properties of an outcomes scale for musculoskeletal injuries. Journal of Athletic Training. 2010 Nov 1;45(6):630-41. | No information | Unknown | Luzita I. Vela, Lv19@txstate.edu. | Nil | Yes | Le CY, Truong LK, Holt CJ, Filbay SR, Dennett L, Johnson JA, Emery CA, Whittaker JL. Searching for the Holy grail: a systematic review of health-related quality of life measures for active youth. Journal of Orthopaedic & Sports Physical Therapy. 2021 Oct;51(10):478-91 |
| Musculoskeletal | Musculoskeletal, general | Effective Musculoskeletal Consumer Scale | EC-17 | Australia; Canada | 2007 | To measure effectiveness of self-management programmes in patients with musculoskeletal diseases. | 17 | No specific domains/dimensions identified | Yes | Kristjansson E, Tugwell PS, Wilson AJ, Brooks PM, Driedger SM, Gallois C, O'Connor AM, Qualman A, Santesso N, Wale J, Wells GA. Development of the effective musculoskeletal consumer scale. The Journal of rheumatology. 2007 Jun 1;34(6):1392-400. | No information | Unknown | N. Santesso, 1 Stewart Street, Room 206, Institute of Population Health, University of Ottawa, Ottawa, Ontario K1N 6N5, Canada. E-mail: santesso@uottawa.ca | https://www.jrheum.org/content/jrheum/34/6/1392.full.pdf | Yes | Murphy M, Hollinghurst S, Salisbury C. Identification, description and appraisal of generic PROMs for primary care: a systematic review. BMC family practice. 2018 Dec;19:1-2. Hansen CW, Esbensen BA, de Thurah A, Christensen R, de Wit M, Cromhout PF. Outcome measures in rheumatology applied in self-management interventions targeting people with inflammatory Arthritis A systematic review of outcome domains and measurement instruments. InSeminars in Arthritis and Rheumatism 2022 Jun 1 (Vol. 54, p. 151995). WB Saunders |
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| Musculoskeletal | Musculoskeletal, general | Fear Avoidance Component Scale | FACS | USA | 2015 | To comprehensively evaluate fear avoidance in patients with painful medical conditions. | 20 | No specific domains/dimensions identified | Yes | Neblett R, Mayer TG, Hartzell MM, Williams MJ, Gatchel RJ. The Fear‐avoidance components scale (FACS): development and psychometric evaluation of a new measure of pain‐related fear avoidance. Pain Practice. 2016 Apr;16(4):435-50. | No information | Unknown | Tom G. Mayer, MD, PRIDE Research Foundation, 5701 Maple Ave. #100, Dallas, TX 75235, U.S.A. E-mail: tgmayer@pridedallas.com. | https://www.pridedallas.com/wp-content/uploads/2016/04/facs_english.pdf | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Musculoskeletal, general | Foot and Ankle Ability Measure Activities of Daily Living | FAAM ADL | USA | 2005 | To evaluate changes in self-reported physical function in everyday activities for individuals with leg, ankle, and foot musculoskeletal disorders. | 21 | No specific domains/dimensions identified | Yes | Martin RL, Irrgang JJ, Burdett RG, Conti SF, Van Swearingen JM. Evidence of validity for the Foot and Ankle Ability Measure (FAAM). Foot Ankle Int. 2005 Nov;26(11):968-83 | No information | Unknown | https://www.sralab.org/rehabilitation-measures/foot-and-ankle-ability-measures | Yes | Martin RL, Irrgang JJ. A survey of self-reported outcome instruments for the foot and ankle. J Orthop Sports Phys Ther. 2007;37(2):72-84. doi:10.2519/jospt.2007.2403 | ||
| Musculoskeletal | Musculoskeletal, general | Injustice Experience Questionnaire | IEQ | Canada | 2008 | To assess perceived injustice associated with injury. | 12 | 2 | Severity/Irreparability; Blame/Unfairness | Yes | Sullivan MJ, Adams H, Horan S, Maher D, Boland D, Gross R. The role of perceived injustice in the experience of chronic pain and disability: scale development and validation. J Occup Rehabil. 2008 Sep;18(3):249-61 | Yes | Unknown | Michael Sullivan, michael.sullivan@mcgill.ca | https://citeseerx.ist.psu.edu/document?repid=rep1&type=pdf&doi=5fd27c83d2c77d20ada1681294ab1432d3691d84 | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Musculoskeletal, general | Keele Musculoskeletal Patient Reported Outcome Measure | MSK-PROM | UK | 2015 | To monitor health status of patients with a range of musculoskeletal disorders. | 6 | No specific domains/dimensions identified | Yes | Hill JC, Thomas E, Hill S, Foster NE, Van Der Windt DA. Development and validation of the keele musculoskeletal patient reported outcome measure (MSK-PROM). PLoS One. 2015 Apr 30;10(4):e0124557. | No information | Unknown | Jonathan Hill, j.hill@keele.ac.uk | https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0124557 | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Musculoskeletal, general | Multidimensional Task Ability Profile | MTAP | USA | 2004 | To identify specific functional limitations and the general effect of functional limitations on a person's ability to work, provide self-care in activities of daily living, and participate in other home and community activities. | 50 | No specific domains/dimensions identified | Yes | Mayer J, Mooney V, Matheson L, Leggett S, Verna J, Balourdas G, DeFilippo G. Reliability and validity of a new computer-administered pictorial activity and task sort. Journal of Occupational Rehabilitation. 2005 Jun;15:203-13. | Yes | Yes, fees may apply | https://mtapsystems.com | Nil | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Musculoskeletal, general | Musculoskeletal Function Assessment | MFA | USA | 1996 | To detect small differences in functioning among patients with musculoskeletal disorders of the extremities. | 100 | 10 | Self care; Rest and sleep; Fine motor skills; Mobility; work; Housework; Recreation and leisure; Family relationships; Cognition and thinking; Emotional adjustment and coping | Yes | Engelberg R, Martin DP, Agel J, Obremsky W, Coronado G, Swiontkowski MF. Musculoskeletal Function Assessment instrument: criterion and construct validity. Journal of orthopaedic research. 1996 Mar;14(2):182-92. Martin DP, Engelberg R, Agel J, Snapp D, Swiontkowski MF. Development of a musculoskeletal extremity health status instrument: the Musculoskeletal Function Assessment instrument. Journal of Orthopaedic Research. 1996 Mar;14(2):173-81. https://onlinelibrary.wiley.com/doi/pdf/10.1002/jor.1100140203 |
Yes | Unknown | The 100-item MFA instrument and scoring instructions can be obtained by writing to MFA Project, University of Washington, Box 359798, Seattle, WA 98104-2499, U.S.A | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Musculoskeletal, general | Musculoskeletal Health Questionnaire | MSK-HQ | UK | 2016 | To allow people with musculoskeletal conditions (such as arthritis or back pain) to report their symptoms and quality of life in a standardised way. | 14 | No specific domains/dimensions identified | Yes | Hill JC, Kang S, Benedetto E, Myers H, Blackburn S, Smith S, Dunn KM, Hay E, Rees J, Beard D, Glyn-Jones S. Development and initial cohort validation of the Arthritis Research UK Musculoskeletal Health Questionnaire (MSK-HQ) for use across musculoskeletal care pathways. BMJ open. 2016 Aug 1;6(8):e012331. See also: Norton S, Ellis B, Santana Suárez B, Schwank S, Fitzpatrick R, Price A, Galloway J. Validation of the Musculoskeletal Health Questionnaire in inflammatory arthritis: a psychometric evaluation. Rheumatology. 2019 Jan 1;58(1):45-51. |
Yes | Unknown | https://versusarthritis.org/policy/resources-for-policy-makers/for-heal… | Nil | Yes | Küçükdeveci AA, Elhan AH, Erdoğan BD, Kutlay Ş, Gökmen D, Ateş C, Yüksel S, Lundgren-Nilsson A, Escorpizo R, Stucki G, Tennant A. Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades. RMD open. 2021 Aug 1;7(2):e001707. | |
| Musculoskeletal | Musculoskeletal, general | Musculoskeletal Pain Intensity and Interference Questionnaire for Professional Orchestra Musicians | MPIIQM | UK | 2014 | To measure musculoskeletal pain and pain interference in terms of function and psychosocial constructs in professional orchestra musicians. | 9 | 2 | Pain intensity; Pain interference | Yes | Berque P, Gray H, McFadyen A. Development and psychometric evaluation of the Musculoskeletal Pain Intensity and Interference Questionnaire for professional orchestra Musicians. Man Ther. 2014 Dec;19(6):575-88. doi: 10.1016/j.math.2014.05.015. Epub 2014 Jun 10. PMID: 24984929. | No information | Unknown | https://www.musicianshealth.co.uk/MPIIQMuserguide.pdf | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Musculoskeletal, general | Pain Disability Questionnaire | PDQ | USA | 2004 | To measure disability in chronic disabling musculoskeletal disorders. | 15 | 2 | Physical function; Psychosocial function | Yes | Anagnostis C, Gatchel RJ, Mayer TG. The pain disability questionnaire: a new psychometrically sound measure for chronic musculoskeletal disorders. Spine (Phila Pa 1976). 2004 Oct 15;29(20):2290-302; discussion 2303. doi: 10.1097/01.brs.0000142221.88111.0f. PMID: 15480144. | No information | Unknown | https://coa.org/docs/Pain-Disability-Questionnaire.pdf | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Musculoskeletal, general | Patient-Specific Functional Scale | PSFS | Canada | 1995 | To assess functional change, primarily in patients presenting with musculoskeletal disorders. | 5 | No specific domains/dimensions identified | Yes | Stratford P, Gill C, Westaway M, Binkley J. Assessing disability and change on individual patients: a report of a patient specific measure. Physiotherapy Canada 1995; 47:258-63 | Yes | Unknown | https://www.physiotutors.com/questionnaires/patient-specific-functional-scale-psfs/ | Yes | Barten JA, Pisters MF, Huisman PA, Takken T, Veenhof C. Measurement properties of patient-specific instruments measuring physical function. Journal of clinical epidemiology. 2012 Jun 1;65(6):590-601. Gagnier JJ, Huang H, Mullins M, Marinac-Dabić D, Ghambaryan A, Eloff B, Mirza F, Bayona M. Measurement properties of patient-reported outcome measures used in patients undergoing total hip arthroplasty: a systematic review. JBJS reviews. 2018 Jan 1;6(1):e2. |
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| Musculoskeletal | Musculoskeletal, general | Pediatric Outcomes Data Collection Instrument - Self Report | PODCI - Self Report | USA | 1998 | To assess changes following paediatric orthopaedic interventions for a broad range of diagnoses. | 86 | 4 | Original scales: Global function and comfort (Upper extremity function, Physical function and sports, Transfers and mobility); Happy and satisfied; Expectations; Physical function Updated suggested factors (2009): Upper extremity; Comfort and General Health; Mobility; Self worth |
Yes | Daltroy LH, Liang MH, Fossel AH, Goldberg MJ. The POSNA pediatric musculoskeletal functional health questionnaire: report on reliability, validity, and sensitivity to change. Pediatric Outcomes Instrument Development Group. Pediatric Orthopaedic Society of North America. J Pediatr Orthop. 1998 Sep-Oct;18(5):561-71 | PubliclYes available | Unknown | https://www.gillettechildrens.org/assets/uploads/general/Forms/Gait_Lab_Forms/9990-152_Adolescent_Outcomes_Questionnaire.pdf | Yes | Saris TF, Kalle JR, Sierevelt IN, Eygendaal D, van Bergen CJ. Quality of patient-and proxy-reported outcomes for children with impairment of the lower extremity: A systematic review using the COnsensus-based Standards for selection of health Measurement INstruments methodology. Journal of Children's Orthopaedics. 2024 Feb;18(1):96-110. Kalle JR, Saris TF, Sierevelt IN, Eygendaal D, van Bergen CJ. Quality of patient-and proxy-reported outcomes for children with impairment of the upper extremity: a systematic review using the COSMIN methodology. Journal of Patient-Reported Outcomes. 2022 Jun 2;6(1):58 |
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| Musculoskeletal | Neck pain | Neck Bournemouth questionnaire | NBQ | UK | 2002 | To measure pain perception of patients with non specific neck pain. | 7 | No specific domains/dimensions identified | Yes | Bolton JE. Sensitivity and specificity of outcome measures in patients with neck pain: detecting clinically significant improvement. Spine (Phila Pa 1976). 2004 Nov 1;29(21):2410-7; discussion 2418 | No information | Unknown | https://www.getwellwithatwell.com/storage/app/media/myFiles/BournemouthNeck.pdf | Yes | Schellingerhout JM, Heymans MW, Verhagen AP, de Vet HC, Koes BW, Terwee CB. Measurement properties of translated versions of neck-specific questionnaires: a systematic review. BMC medical research methodology. 2011 Dec;11:1-4 Schellingerhout JM, Verhagen AP, Heymans MW, Koes BW, de Vet HC, Terwee CB. Measurement properties of disease-specific questionnaires in patients with neck pain: a systematic review. Quality of Life Research. 2012 May;21:659-70 |
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| Musculoskeletal | Neck pain | Pictorial Fear of Activity Scale-Cervical | PFActS-C | USA | 2008 | To assess fear of movement in patients with cervical (neck) pain. | 19 | No specific domains/dimensions identified | Yes | Turk DC, Robinson JP, Sherman JJ, Burwinkle T, Swanson K. Assessing fear in patients with cervical pain: development and validation of the Pictorial Fear of Activity Scale-Cervical (PFActS-C). Pain. 2008 Sep 30;139(1):55-62. doi: 10.1016/j.pain.2008.03.001. Epub 2008 Apr 15. PMID: 18417291; PMCID: PMC2580774. | No information | Unknown | Dr. Dennis C. Turk, Department of Anesthesiology, Box 356540, University of Washington, Seattle, Washington 98195, Telephone: 206/616-2626, FAX: 206/543-2958, Email: turkdc@u.washington.edu | Nil | Yes | Ritchie C, Andersen TE, Ravn SL, Söderlund A, Sterling M, Carroll L, Connelly LB, Cote P, Curatolo M, Grant G, Jull G. A systematic review shows minimal evidence for measurement properties of psychological functioning outcomes in whiplash. Journal of Clinical Epidemiology. 2022 Nov 1;151:29-44 | |
| Musculoskeletal | Osteoarthritis | Animated Activity Questionnaire | AAQ | The Netherlands | 2015 | To measure physical functioning in patients with hip or knee osteoarthritis. | 17 | No specific domains/dimensions identified | Yes | Peter WF, Loos M, De Vet HC, Boers M, Harlaar J, Roorda LD, Poolman RW, Scholtes VA, Boogaard J, Buitelaar H, Steultjens M. Development and preliminary testing of a computerized animated activity questionnaire in patients with hip and knee osteoarthritis. Arthritis care & research. 2015 Jan;67(1):32-9. | Yes | Unknown | https://animatedactivityquestionnaire.com | Yes | Queiroga F, Cross M, Thomas MJ, March L, Epstein J, Guillemin F. A scoping review of patient self-report measures of flare in knee and hip osteoarthritis (OA): A report from the OMERACT flares in OA working group. InSeminars in arthritis and rheumatism 2023 Dec 1 (Vol. 63, p. 152281). WB Saunders. Pinto-Carral A, Fernandez-Villa T, de la Torre AJ. Patient-reported mobility: a systematic review. Archives of Physical Medicine and Rehabilitation. 2016 Jul 1;97(7):1182-94 |
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| Musculoskeletal | Osteoarthritis | Ankle Osteoarthritis Scale | AOS | USA | 1998 | To measure patient symptoms and disabilities related to ankle arthritis. | 18 | 2 | Pain; Disability | Yes | Domsic RT, Saltzman CL. Ankle osteoarthritis scale. Foot Ankle Int. 1998 Jul;19(7):466-71 | No information | Unknown | https://patientreportedoutcomes2.sites.olt.ubc.ca/files/2014/04/AOS-Questionnaire.pdf | Yes | Martin RL, Irrgang JJ. A survey of self-reported outcome instruments for the foot and ankle. Journal of Orthopaedic & Sports Physical Therapy. 2007 Feb;37(2):72-84. Saleh KJ, Davis A. Measures for pain and function assessments for patients with osteoarthritis. JAAOS-Journal of the American Academy of Orthopaedic Surgeons. 2016 Nov 1;24(11):e148-62. |
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| Musculoskeletal | Osteoarthritis | Australian/Canadian Osteoarthritis Hand Index | AUSCAN | Australia; Canada | 2002 | To assess pain, disability and joint stiffness in hand osteoarthritis. | 15 | 3 | Pain; Stiffness; Physical functioning | Yes | Bellamy N, Campbell J, Haraoui B, Gerecz-Simon E, Buchbinder R, Hobby K, MacDermid JC. Clinimetric properties of the AUSCAN Osteoarthritis Hand Index: an evaluation of reliability, validity and responsiveness. Osteoarthritis and cartilage. 2002 Nov 1;10(11):863-9. | Yes | Unknown | Professor N. Bellamy, Director, Centre of National Research on Disability and Rehabilitation Medicine (CONROD), The University of Queensland Faculty of Health Sciences, Level 3, Mayne Medical School, Herston Rd., Herston, Queensland 4006, Australia. Tel.: 61 7 3365 5558; Fax: 61 7 3346 4603, E-mail: nbellamy@medicine.uq.edu.au | https://oarsi.org/sites/oarsi/files/docs/2013/auscan_questionnaire_information.pdf | Yes | Dziedzic KS, Thomas E, Hay EM. A systematic search and critical review of measures of disability for use in a population survey of hand osteoarthritis (OA). Osteoarthritis and cartilage. 2005 Jan 1;13(1):1-2 Swinkels RA, Bouter LM, Oostendorp RA, van den Ende CH. Impairment measures in rheumatic disorders for rehabilitation medicine and allied health care: a systematic review. Rheumatology International. 2005 Sep;25:501-12 |
| Musculoskeletal | Osteoarthritis | Computerized adaptive test Knee Osteoarthritis Outcome Scores | CAT KOOS | USA | 2020 | To measure the impairment, activity limitations, and participation restrictions of people knee osteoarthritis. | 28 | 5 | Function; ADLs; Pain; Symptoms; Stiffness | Yes | Banerjee S, Deirmengian GK, Levicoff E, Abboud JA, Plummer O, Courtney PM. Accuracy and Validity of Computer Adaptive Testing for Outcome Assessment in Patients Undergoing Total Knee Arthroplasty. J Arthroplasty. 2020 Jul;35(7):1819-1825. doi: 10.1016/j.arth.2020.02.016. Epub 2020 Feb 13. PMID: 32146112. | Yes | Unknown | P. Maxwell Courtney, MD, Department of Orthopaedic Surgery, Thomas Jefferson University Hospital, Rothman Orthopaedic Institute, 925 Chestnut Street, Philadelphia, PA 19107. | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Osteoarthritis | Hip disability and Osteoarthritis Hip Disability and Osteoarthritis Outcome Score-Physical Function Short form | HOOS-PS | Canada | 2009 | To elicit people's opinions about the difficulties they experience with activity due to problems with their hips. | 5 | 2 | Activities of daily living; Sport and Recreation | Yes | Davis AM, Perruccio AV, Canizares M. Comparative, validity and responsiveness of the HOOS-PS and KOOS-PS to the WOMAC physical function subscale in total joint replacement for osteoarthritis. Osteoarthritis Cartilage. 2009 Jul;17(7):843-7 Davis AM, Perruccio AV, Canizares M, Tennant A, Hawker GA, Conaghan PG, Roos EM, Jordan JM, Maillefert JF, Dougados M, Lohmander LS. The development of a short measure of physical function for hip OA HOOS-Physical Function Shortform (HOOS-PS): an OARSI/OMERACT initiative. Osteoarthritis and cartilage. 2008 May 1;16(5):551-9. |
Yes | Unknown | Professor Ewa Roos, E-mail: eroos@health.sdu.dk | Nil | Yes | Braaksma C, Wolterbeek N, Veen MR, Prinsen CAC, Ostelo RWJG. Systematic review and meta-analysis of measurement properties of the Hip disability and Osteoarthritis Outcome Score - Physical Function Shortform (HOOS-PS) and the Knee Injury and Osteoarthritis Outcome Score - Physical Function Shortform (KOOS-PS). Osteoarthritis Cartilage. 2020 Dec;28(12):1525-1538. doi: 10.1016/j.joca.2020.08.004. Epub 2020 Aug 19. PMID: 32827668. |
| Musculoskeletal | Osteoarthritis | Hip disability and Osteoarthritis Outcome Score | HOOS-12 | USA; Sweden | 2019 | To measure the patient's perspective on the impact of hip osteoarthritis and other hip disorders and their treatment. | 12 | 3 | Pain; Function; Quality of Life | Yes | Gandek B, Roos EM, Franklin PD, Ware JE,Jr. A 12-item short form of the Hip disability and Osteoarthritis Outcome Score (HOOS-12): tests of reliability, validity and responsiveness. Osteoarthritis Cartilage. 2019;27:754-761 | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/hip-disability-and-osteoarthritis-outcome-score | https://orthopowertools.com/HOOS12 | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Osteoarthritis | Intermittent And Constant Osteoarthritis Pain Measure | ICOAP | Canada | 2008 | To assess pain in patients with hip or knee Osteoarthritis. | 11 | 2 | Constant pain; Intermittent pain | Yes | Hawker GA, Davis AM, French MR, Cibere J, Jordan JM, March L, Suarez-Almazor M, Katz JN, Dieppe P. Development and preliminary psychometric testing of a new OA pain measure–an OARSI/OMERACT initiative. Osteoarthritis and Cartilage. 2008 Apr 1;16(4):409-14. | No information | Unknown | Dr Gillian A. Hawker, Department of Medicine, Division of Rheumatology, Women’s College Hospital, 76 Grenville Street, 8th Floor, Toronto, Ontario M5S 1B2, Canada. Tel: 1-416-323-7722; Fax: 1-416-323-7513; E-mail: g.hawker@utoronto.ca | Yes | Queiroga F, Cross M, Thomas MJ, March L, Epstein J, Guillemin F. A scoping review of patient self-report measures of flare in knee and hip osteoarthritis (OA): A report from the OMERACT flares in OA working group. InSeminars in arthritis and rheumatism 2023 Dec 1 (Vol. 63, p. 152281). WB Saunders. Tanghe KK, Beiene ZA, McLawhorn AS, MacLean CH, Gausden EB. Metrics of clinically important changes in total hip arthroplasty: a systematic review. The Journal of Arthroplasty. 2023 Feb 1;38(2):383-8. |
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| Musculoskeletal | Osteoarthritis | International Osteoporosis Foundation (IOF) Quality of Life questionnaire | QUALEFFO-41 | The Netherlands | 2000 | To assess quality of life in people with osteoporosis. | 41 | 5 | Pain; Physical function; Social function; General health perception; Mental health function | Yes | Lips P, Leplege A. Development and validation of quality of life questionnaire for patients with vertebral fractures: Qualeffo-41. Quality of Life Research. 2000;9(6a):763-766 | Yes | Unknown | https://www.osteoporosis.foundation/sites/iofbonehealth/files/2021-09/IOF-Qualeffo41-questionnaire-England.pdf | Yes | Resnik L, Borgia M, Silver B, Cancio J. Systematic review of measures of impairment and activity limitation for persons with upper limb trauma and amputation. Archives of physical medicine and rehabilitation. 2017 Sep 1;98(9):1863-92. | |
| Musculoskeletal | Osteoarthritis | Michigan Hand Outcomes Questionnaire | MHQ | USA | 1998 | To measure health state domains important to patients with hand disorders. | 37 | 6 | Overall hand function (right hand, left hand); ADLs (right hand, left hand, both hands); Aesthetics (right hand, left hand); Satisfaction with hand function (right hand, left hand); Work performance; Pain | Yes | Chung KC, Pillsbury MS, Walters MR, Hayward RA. Reliability and validity testing of the Michigan Hand Outcomes Questionnaire. The Journal of hand surgery. 1998 Jul 1;23(4):575-87. | Yes | Unknown | https://available-inventions.umich.edu/product/michigan-hand-outcomes-q… | Nil | Yes | Hoang-Kim A, Pegreffi F, Moroni A, Ladd A. Measuring wrist and hand function: common scales and checklists. Injury. 2011 Mar 1;42(3):253-8. Schoneveld K, Wittink H, Takken T. Clinimetric evaluation of measurement tools used in hand therapy to assess activity and participation. Journal of Hand Therapy. 2009 Jul 1;22(3):221-36. |
| Musculoskeletal | Osteoarthritis | Osteoarthritis Quality Of Life | OAQoL | UK | 2008 | To assess the impact of osteoarthritis on quality of life. | 22 | No specific domains/dimensions identified | Yes | Keenan AM, Mckenna SP, Doward LC, Conaghan PG, Emery P, Tennant A. Development and validation of a needs‐based quality of life instrument for osteoarthritis. Arthritis Care & Research: Official Journal of the American College of Rheumatology. 2008 Jun 15;59(6):841-8. | Yes | Unknown | https://licensing.leeds.ac.uk/product/oa-qol-osteoarthritis-quality-of-… | Nil | Yes | Lundgren-Nilsson Å, Dencker A, Palstam A, Person G, Horton MC, Escorpizo R, Küçükdeveci AA, Kutlay S, Elhan AH, Stucki G, Tennant A. Patient-reported outcome measures in osteoarthritis: a systematic search and review of their use and psychometric properties. RMD open. 2018 Dec 1;4(2):e000715. | |
| Musculoskeletal | Osteoarthritis | Osteoarthritis Questionnaire | OA-Quest | Australia | 2016 | To comprehensively capture the potentially modifiable burden of osteoarthritis. | 42 | 7 | Physical distress; Physical limitations; Psychosocial distress; Physical de-conditioning; Financial hardship; Sleep disturbances; Lost productivity | Yes | Busija L, Buchbinder R, Osborne RH. Development and preliminary evaluation of the OsteoArthritis Questionnaire (OA-Quest): a psychometric study. Osteoarthritis Cartilage. 2016 Aug;24(8):1357-66. doi: 10.1016/j.joca.2016.03.014. Epub 2016 Mar 31. PMID: 27038491. | No information | Unknown | Lucy.Busija@acu.edu.au | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Osteoarthritis | Patient-Reported Wrist Evaluation | PRWE | Canada | 1998 | To rate wrist-related pain and disability in functional activities. | 15 | 2 | Pain; Function (Specific Activities, Usual Activities) | Yes | MacDermid JC, Turgeon T, Richards RS, Beadle M, Roth JH. Patient rating of wrist pain and disability: a reliable and valid measurement tool. Journal of orthopaedic trauma. 1998 Nov 1;12(8):577-86. | No information | Unknown | Dr. Joy C. MacDermid, Hand and Upper Limb Centre Clinical Research Laboratory, Monsignor Roney Ambulatory Care Centre, 930 Richmond Street, London, Ontario N6A 3J4, Canada. |
https://www.physio-pedia.com/PRWE_Score | Yes | Schoneveld K, Wittink H, Takken T. Clinimetric evaluation of measurement tools used in hand therapy to assess activity and participation. Journal of Hand Therapy. 2009 Jul 1;22(3):221-36 Dowrick AS, Gabbe BJ, Williamson OD, Cameron PA. Outcome instruments for the assessment of the upper extremity following trauma: a review. Injury. 2005 Apr 1;36(4):468-76 |
| Musculoskeletal | Osteoarthritis | Western Ontario And Mcmaster Universities Osteoarthritis Index | WOMAC | Canada | 1988 | To assess pain, stiffness, and function in patients with osteoarthritis of the hip or knee. | 24 | 3 | Pain; Stiffness; Function | Yes | Bellamy N, Buchanan WW, Goldsmith CH, Campbell J, Stitt LW. Validation study of WOMAC: a health status instrument for measuring clinically important patient relevant outcomes to antirheumatic drug therapy in patients with osteoarthritis of the hip or knee. The Journal of rheumatology. 1988 Dec 1;15(12):1833-40. Bellamy N, Buchanan WW. A preliminary evaluation of the dimensionality and clinical importance of pain and disability in osteoarthritis of the hip and knee. Clinical rheumatology. 1986 Jun;5:231-41. |
Yes | Yes, fees may apply | The WOMAC is copyrighted by the Professor N. Bellamy, https://www.womac.com/contact/ | Nil | Yes | Ueland TE, Disantis A, Carreira DS, Martin RL. Patient-reported outcome measures and clinically important outcome values in hip arthroscopy: a systematic review. JBJS reviews. 2021 Jan 1;9(1):e20. Ahmad MA, Xypnitos FN, Giannoudis PV. Measuring hip outcomes: common scales and checklists. Injury. 2011 Mar 1;42(3):259-64. |
| Musculoskeletal | Osteoarthritis | Western Ontario Osteoarthritis Shoulder | WOOS Index | Canada | 2001 | To evaluate the disease specific quality of life of patients with symptomatic OA of the shoulder. | 19 | 4 | Pain and physical symptoms; Sport, recreation and work function; Lifestyle function; Emotional function | Yes | Lo IK, Griffin S, Kirkley A. The development of a disease-specific quality of life measurement tool for osteoarthritis of the shoulder: The Western Ontario Osteoarthritis of the Shoulder (WOOS) index. Osteoarthritis and Cartilage. 2001 Nov 1;9(8):771-8. | Yes | Unknown | Copyright A. Kirkley MD, S.Griffin CSS, I. Lo E-Mail: akirkley@julian.uwo.ca, Address: Fowler Kennedy Sport Medicine Clinic, University of Western Ontario, London, Ontario, Canada. |
Nil | Yes | Bot SD, Terwee CB, Van der Windt DA, Bouter LM, Dekker J, De Vet HC. Clinimetric evaluation of shoulder disability questionnaires: a systematic review of the literature. Annals of the rheumatic diseases. 2004 Apr 1;63(4):335-41 Huang H, Grant JA, Miller BS, Mirza FM, Gagnier JJ. A systematic review of the psychometric properties of patient-reported outcome instruments for use in patients with rotator cuff disease. The American journal of sports medicine. 2015 Oct;43(10):2572-82. |
| Musculoskeletal | Physiotherapy, musculoskeletal conditions and injury | Outpatient Physical Therapy Improvement In Movement Assessment Log | OPTIMAL | USA | 2005 | To measure difficulty and self-confidence in performing 22 movements that a patient/client needs to accomplish in order to do various functional activities. | 46 | 2 | Difficulty (upper extremity, lower extremity, and trunk); Confidence (upper extremity, lower extremity, and trunk) | Yes | Guccione AA, Mielenz TJ, Devellis RF, Goldstein MS, Freburger JK, Pietrobon R, Miller SC, Callahan LF, Harwood K, Carey TS. Development and testing of a self-report instrument to measure actions: outpatient physical therapy improvement in movement assessment log (OPTIMAL). Physical therapy. 2005 Jun 1;85(6):515-30. | No information | Unknown | AA Guccione, PT, DPT, PhD, FAPTA, Senior Vice President, Practice and Research Division, American Physical Therapy Association, 1111 N Fairfax St, Alexandria, VA 22314-1488 (USA) | Nil | Yes | Pinto-Carral A, Fernandez-Villa T, de la Torre AJ. Patient-reported mobility: a systematic review. Archives of Physical Medicine and Rehabilitation. 2016 Jul 1;97(7):1182-94. Hong I, Bonilha HS. Psychometric properties of upper extremity outcome measures validated by Rasch analysis: a systematic review. International Journal of Rehabilitation Research. 2017 Mar 1;40(1):1-0. |
| Musculoskeletal | Rheumatoid arthritis, Osteoarthritis, Lupus, Scleroderma, Ankylosing spondylitis, Fibromyalgia, Psoriatic arthritis | Health Assessment Questionnaire Disability Index | HAQ-DI | USA | 2005 | To measure health related quality of life factors in various parts of an illness or injury process. | 20 | 8 | Dressing; Arising; Eating; Walking; Hygiene; Reach; Grip; Activities | Yes | Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arthritis & Rheumatism. 1980 Jan;23(2):137-45. Bruce B, Fries JF. The health assessment questionnaire (HAQ). Clinical and experimental rheumatology. 2005 Oct;23(5):S14. Bruce B, Fries JF. The Stanford health assessment questionnaire: dimensions and practical applications. Health and quality of life outcomes. 2003 Dec;1:1-6. |
Yes | Unknown | The HAQ is copyrighted by Stanford University for the purpose of insuring that it will be used unmodified to preserve the validity of its results and contribute to standardization of assessment across studies. However, it is considered to be in the public domain, with the request that users cite relevant HAQ articles(s) in their publications. There is no charge from Stanford for permission to use the English version of the HAQ. However, other groups that have independently translated the HAQ may charge for their versions. | https://selfmanagementresource.com/wp-content/uploads/English_-_Stanford_haq20.pdf | Yes | Janssen CA, Oude Voshaar MA, Ten Klooster PM, Jansen TL, Vonkeman HE, van de Laar MA. A systematic literature review of patient-reported outcome measures used in gout: an evaluation of their content and measurement properties. Health and quality of life outcomes. 2019 Dec;17:1-1. Hopman-Rock M, van Hirtum H, de Vreede P, Freiberger E. Activities of daily living in older community-dwelling persons: a systematic review of psychometric properties of instruments. Aging clinical and experimental research. 2019 Jul 1;31:917-25. |
| Musculoskeletal | Shoulder, function | Kerlan-Jobe Orthopaedic Clinic score | KJOC | USA | 2010 | To measure the functional status of the upper extremity in the over head athlete. | 10 | No specific domains/dimensions identified | Yes | Alberta FG, ElAttrache NS, Bissell S, Mohr K, Browdy J, Yocum L, Jobe F. The development and validation of a functional assessment tool for the upper extremity in the overhead athlete. Am J Sports Med. 2010 May;38(5):903-11. doi: 10.1177/0363546509355642. Epub 2010 Mar 24. PMID: 20335509. | Yes | Unknown | https://orthotoolkit.com/kjoc/ | Nil | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Shoulder, function | Patient American Shoulder and Elbow Surgeons Standardized Shoulder Assessment Form | pASES | USA | 1994 | To assess capacity in activities in daily living in people with should dysfunction, regardless of diagnosis. | 11 | 2 | Pain; ADLs | Yes | Richards RR, An KN, Bigliani LU, Friedman RJ, Gartsman GM, Gristina AG, Iannotti JP, Mow VC, Sidles JA, Zuckerman JD. A standardized method for the assessment of shoulder function. J Shoulder Elbow Surg. 1994;3:347-52 | No information | Unknown | American Shoulder and Elbow Surgeons, 6300 North River Rd., Suite 727, Rosemont, IL 60018-4226. | Nil | Yes | Aldon-Villegas R, Ridao-Fernández C, Torres-Enamorado D, Chamorro-Moriana G. How to Assess Shoulder Functionality: A Systematic Review of Existing Validated Outcome Measures. Diagnostics. 2021; 11(5):845. https://doi.org/10.3390/diagnostics11050845 |
| Musculoskeletal | Shoulder, function | Shoulder Pain and Disability Index | SPADI | USA | 1991 | To measure the pain and disability associated with shoulder pathology, for both current status and change in status over time. | 13 | 2 | Pain; Disability | Yes | Roach KE, Budiman-Mak E, Songsiridej N, Lertratanakul Y. Development of a shoulder pain and disability index. Arthritis Care Res. 1991 Dec;4(4):143-9. | No information | Unknown | https://www.sralab.org/rehabilitation-measures/shoulder-pain-and-disability-index | Yes | Salerno DF, Copley-Merriman C, Taylor TN, Shinogle J, Schulz RM. A review of functional status measures for workers with upper extremity disorders. Occupational and environmental medicine. 2002 Oct 1;59(10):664-70. Wiitavaara B, Florin J. Content and psychometric evaluations of questionnaires for assessing physical function in people with arm–shoulder–hand disorders. A systematic review of the literature. Disability and Rehabilitation. 2022 Nov 20;44(24):7575-86. |
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| Musculoskeletal | Shoulder, function | Simple Shoulder Test | SST | USA | 1993 | To provide a standardised way of recording the function of a shoulder before and after treatment. | 12 | No specific domains/dimensions identified | Yes | Lippitt SB, Harryman II DT & Matsen III FA. A practical tool for evaluating function: the simple shoulder test. In “The shoulder a balance of mobility and stability workshop held in vail”. 1993. pp 501-518. FA Masten II Editor | No information | Unknown | https://www.sralab.org/rehabilitation-measures/simple-shoulder-test | Yes | Thoomes-de Graaf M, Scholten-Peeters GG, Schellingerhout JM, Bourne AM, Buchbinder R, Koehorst M, Terwee CB, Verhagen AP. Evaluation of measurement properties of self-administered PROMs aimed at patients with non-specific shoulder pain and “activity limitations”: a systematic review. Quality of Life Research. 2016 Sep;25:2141-60 Schmidt S, Ferrer M, González M, González N, Valderas JM, Alonso J, Escobar A, Vrotsou K, EMPRO Group. Evaluation of shoulder-specific patient-reported outcome measures: a systematic and standardized comparison of available evidence. Journal of Shoulder and Elbow Surgery. 2014 Mar 1;23(3):434-44. |
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| Musculoskeletal | Shoulder, general | Brophy-Marx Shoulder Activity Scale | USA | 2005 | To measure shoulder activity in various shoulder disorders, and from this, patient predict outcomes. | 7 | 2 | Activities; Sports | Yes | Brophy RH, Beauvais RL, Jones EC, Cordasco FA, Marx RG. Measurement of shoulder activity level. Clinical Orthopaedics and Related Research®. 2005 Oct 1;439:101-8. | Yes | Unknown | Robert G. Marx, MD, Hospital for Special Surgery, 535 East 70th Street, New York, NY 10021. Phone: 212-606-1645; Fax: 212-774-7822; E-mail: marxr@hss.edu. | Nil | None identified in March 2025 | None identified in March 2025 | |
| Musculoskeletal | Shoulder, general | Penn Shoulder Score | PSS | USA | 2006 | To assess pain, patient satisfaction with shoulder function. | 24 | 3 | Pain; Satisfaction; Function | Yes | Leggin BG, Michener LA, Shaffer MA, Brenneman SK, Iannotti JP, Williams GR Jr. The Penn shoulder score: reliability and validity. J Orthop Sports Phys Ther. 2006 Mar;36(3):138-51. doi: 10.2519/jospt.2006.36.3.138. PMID: 16596890. | Yes | Unknown | https://orthotoolkit.com/penn-shoulder-score/ | Yes | Schmidt S, Ferrer M, González M, González N, Valderas JM, Alonso J, Escobar A, Vrotsou K, EMPRO Group. Evaluation of shoulder-specific patient-reported outcome measures: a systematic and standardized comparison of available evidence. Journal of Shoulder and Elbow Surgery. 2014 Mar 1;23(3):434-44. Huang H, Grant JA, Miller BS, Mirza FM, Gagnier JJ. A systematic review of the psychometric properties of patient-reported outcome instruments for use in patients with rotator cuff disease. The American journal of sports medicine. 2015 Oct;43(10):2572-82. |
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| Musculoskeletal | Shoulder, instability | Oxford shoulder instability score | OSIS | UK | 1999 | To assess outcomes of shoulder surgery for instability/dislocation problems. | 12 | No specific domains/dimensions identified | Yes | Dawson J, Fitzpatrick R, Carr A. The assessment of shoulder instability. The development and validation of a questionnaire. J Bone Joint Surg Br. 1999 May;81(3):420-6 | Yes | Unknown | https://www.ouh.nhs.uk/shoulderandelbow/information/documents/osi_score13.pdf | Yes | Dabija DI, Jain NB. Minimal clinically important difference of shoulder outcome measures and diagnoses: a systematic review. American journal of physical medicine & rehabilitation. 2019 Aug 1;98(8):671-6. Rouleau DM, Faber K, MacDermid JC. Systematic review of patient-administered shoulder functional scores on instability. Journal of shoulder and elbow surgery. 2010 Dec 1;19(8):1121-8. |
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| Musculoskeletal | Shoulder, instability | Posterior Shoulder Instability Questionnaire | PSI-Q | Australia | 2024 | To assess posterior shoulder instability. | 22 | 5 | Pain; Instability/Weakness/Stiffness; Function; Occupation and sport; Quality of life and satisfaction | Yes | Watson L, Hoy G, Barwood S, Pizzari T, Balster S, Mulholland J, French J, Lawrence S, Verdon D, Warby S. The Posterior Shoulder Instability Questionnaire (PSI-Q): Internal consistency, content and criterion validity, responsiveness, and reliability of a new tool for the assessment of posterior shoulder instability. J Shoulder Elbow Surg. 2024 May 29:S1058-2746(24)00383-5. doi: 10.1016/j.jse.2024.03.066. Epub ahead of print. PMID: 38821172. | No information | Unknown | sarahannwarby@gmail.com; S.Warby@latrobe.edu.au | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Shoulder, surgery | Functional Internal Rotation Scale | USA | 2020 | To assess a patient's functional internal rotation following shoulder arthroplasty. | 10 | No specific domains/dimensions identified | Yes | Aleem AW, Chamberlain AM, Keener JD. The functional internal rotation scale: a novel shoulder arthroplasty outcome measure. JSES Int. 2019 Nov 27;4(1):202-206. doi: 10.1016/j.jses.2019.10.002. PMID: 32544941; PMCID: PMC7075749. | No information | Unknown | https://www.sciencedirect.com/science/article/pii/S2468602619300531 | None identified in March 2025 | None identified in March 2025 | |||
| Musculoskeletal | Shoulder, surgery | Oxford Shoulder Score | OSS | UK | 1996 | To assess outcomes of shoulder surgery. | 12 | No specific domains/dimensions identified | Yes | Dawson J, Fitzpatrick R, Carr AN. Questionnaire on the perceptions of patients about shoulder surgery. The Journal of Bone & Joint Surgery British Volume. 1996 Jul 1;78(4):593-600. | Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/oxford-shoulder-score-oss/ | http://www.orthopaedicscore.com/scorepages/oxford_shoulder_score.html | Yes | Nowak LL, Davis AM, Mamdani M, Beaton D, Kennedy C, Schemitsch EH. A systematic review and standardized comparison of available evidence for outcome measures used to evaluate proximal humerus fracture patients. Journal of orthopaedic trauma. 2019 Jul 1;33(7):e256-62 Whittle JH, Peters SE, Manzanero S, Duke PF. A systematic review of patient-reported outcome measures used in shoulder instability research. Journal of Shoulder and Elbow Surgery. 2020 Feb 1;29(2):381-91 |
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| Musculoskeletal | Shoulder, surgery | Single Assessment Numeric Evaluation | SANE | USA | 1999 | To assess shoulder function after shoulder injury or shoulder surgery. | 1 | No specific domains/dimensions identified | Yes | Williams GN, Gangel TJ, Arciero RA, Uhorchak JM, Taylor DC. Comparison of the Single Assessment Numeric Evaluation method and two shoulder rating scales. Outcomes measures after shoulder surgery. Am J Sports Med. 1999 Mar-Apr;27(2):214-21 Williams GN, Molloy JM, DeBerardino TM, Arciero RA, Taylor DC. Evaluation of the Sports Ankle Rating System in young, athletic individuals with acute lateral ankle sprains. Foot Ankle Int. 2003 Mar;24(3):274-82 |
No information | Unknown | G N Williams, Physical Therapy and Orthopaedic Surgery Services, Keller Army Community Hospital, West Point, New York 10996, USA. | Nil | Yes | Abbot S, Proudman S, Sim YP, Williams N. Psychometric properties of patient‐reported outcomes measures used to assess upper limb pathology: a systematic review. ANZ Journal of Surgery. 2022 Dec;92(12):3170-5. Aldon-Villegas R, Ridao-Fernandez C, Torres-Enamorado D, Chamorro-Moriana G. How to assess shoulder functionality: a systematic review of existing validated outcome measures. Diagnostics. 2021 May 8;11(5):845. |
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| Musculoskeletal | Upper limb, general | Functional Arm Scale for Throwers | FAST | USA | 2017 | To assess a patient's perceived symptoms and impact on ADLs of acute Achilles tendon rupture. | 22 | 3 | Throwing; Psychological impact; ADLs; Advancement | Yes | Sauers EL, Bay RC, Snyder Valier AR, Ellery T, Huxel Bliven KC. The Functional Arm Scale for Throwers (FAST)-Part I: The Design and Development of an Upper Extremity Region-Specific and Population-Specific Patient-Reported Outcome Scale for Throwing Athletes. Orthop J Sports Med. 2017 Mar 30;5(3):2325967117698455. doi: 10.1177/2325967117698455. PMID: 28451608; PMCID: PMC5400178. | No information | Unknown | Eric Sauers, Department of Interdisciplinary Health Sciences, Arizona School of Health Sciences, A.T. Still University, Mesa, Arizona, USA; esauers@atsu.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Musculoskeletal | Upper limbs/extremities | Disabilities Of The Arm, Shoulder, And Hand | DASH | Canada | 1996 | To assess symptoms and function of the entire upper extremity. | 30 | No specific domains/dimensions identified | Yes | Hudak PL, Amadio PC, Bombardier C, Beaton D, Cole D, Davis A, Hawker G, Katz JN, Makela M, Marx RG, Punnett L. Development of an upper extremity outcome measure: the DASH (disabilities of the arm, shoulder, and head). American journal of industrial medicine. 1996 Jun;29(6):602-8. Beaton DE, Katz JN, Fossel AH, Wright JG, Tarasuk V, Bombardier C. Measuring the whole or the parts?: validity, reliability, and responsiveness of the Disabilities of the Arm, Shoulder and Hand outcome measure in different regions of the upper extremity. Journal of Hand Therapy. 2001 Apr 1;14(2):128-42. |
Yes | Unknown | Dr. J.G. Wright, Associate Professor of Surgery and Public Health Sciences, University of Toronto, The Hospital for Sick Children, 555 University Avenue, S-107, Toronto, ON, M5G 1X8, Canada. | https://dash.iwh.on.ca/about-dash | Yes | Desai AS, Dramis A, Hearnden AJ. Critical appraisal of subjective outcome measures used in the assessment of shoulder disability. The Annals of The Royal College of Surgeons of England. 2010 Jan;92(1):9-13. Hoang-Kim A, Pegreffi F, Moroni A, Ladd A. Measuring wrist and hand function: common scales and checklists. Injury. 2011 Mar 1;42(3):253-8. |
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| Neurological | Alzheimer's disease | Alzheimer’s Disease-Related Quality Of Life Measure | ADRQOL | USA | 1999 | To assess health-related quality of life in people with Alzheimer’s disease. | 40 | 5 | Social interaction; Awareness of self; Feelings and mood; Enjoyment of activities; Response to surroundings | Yes | Rabins PV, Kasper JD, Kleinman L, Black BS, Patrick DL. Concepts and methods in the development of the ADRQL: an instrument for assessing health-related quality of life in persons with Alzheimer's disease. Journal of Mental Health and Aging. 1999. Kasper JD, Black BS, Shore AD, Rabins PV. Evaluation of the validity and reliability of the Alzheimer Disease-related Quality of Life Assessment Instrument. Alzheimer Disease & Associated Disorders. 2009 Jul 1;23(3):275-84. |
Yes | Unknown | Judith D. Kasper, PhD, Department of Health Policy and Management, Johns Hopkins University Bloomberg School of Public Health, 624 N. Broadway, Baltimore, MD 21205 (e-mail: jkasper@jhsph.edu). | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Alzheimer's disease | Disability Assessment For Dementia | DAD | Canada | 1999 | To quantitatively measure functional abilities in activities of daily living in individuals with cognitive impairments such as dementia. | 40 | 10 | Hygiene; Dressing; Continence; Eating; Meal preparation; Telephoning; Going on an outing; Finance and correspondence; Medications; Leisure and housework | Yes | Gélinas I, Gauthier L, McIntyre M, Gauthier S. Development of a functional measure for persons with Alzheimer’s disease: the disability assessment for dementia. The American Journal of Occupational Therapy. 1999 Sep 1;53(5):471-81. | Yes | Unknown | Isabelle Gélinas, Assistant Professor, School of Physical and Occupational Therapy, McGill University, 3654 Drummond Street, Montreal, Quebec, Canada, H3G 1Y5 | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Alzheimer's disease | Progressive Deterioration Scale | PDS | USA | 1989 | To examine the ability of patients to accomplish basic activities of daily living in 11 areas believed to specifically affect the quality of life of AD patients. | 27 | 11 | Extent to which patient can leave immediate neighbourhood; Ability to travel distances alone; Confusion in familiar settings; Use of familiar household implements; Participation/enjoyment of leisure/cultural activities; Extent to which patient does household chores; Involvement in family finances, budgeting etc.; Interest in doing household tasks; Travel on public transportation; Self-care and routine tasks; Social function/behaviour in social settings | DeJong R, Osterlund OW, Roy GW. Measurement of quality-of-life changes in patients with Alzheimer's disease. Clinical therapeutics. 1989 Jul 1;11(4):545-54. | No information | Unknown | R DeJong | Nil | Yes | Bowling A, Rowe G, Adams S, Sands P, Samsi K, Crane M, Joly L, Manthorpe J. Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales. Aging & mental health. 2015 Jan 2;19(1):13-31. Salek SS, Walker MD, Bayer AJ. A review of quality of life in Alzheimer’s disease: Part 2: Issues in assessing drug effects. Pharmacoeconomics. 1998 Dec;14(6):613-27. |
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| Neurological | Alzheimer's disease | Quality Of Life In Alzheimer’s Disease | QOL-AD | USA | 1999 | To develop and provide psychometric data on perceived quality of life in AD patients as rated by patients and caregivers. | 13 | No specific domains/dimensions identified | Yes | Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of life in Alzheimer's disease: patient and caregiver reports. Journal of Mental health and Aging. 1999 Jan 1;5:21-32. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosomatic medicine. 2002 May 1;64(3):510-9. |
Yes | Unknown | R Logsdon, Logsdon@u.washington.edu | Nil | Yes | Hughes LJ, Farina N, Page TE, Tabet N, Banerjee S. Psychometric properties and feasibility of use of dementia specific quality of life instruments for use in care settings: a systematic review. International Psychogeriatrics. 2021 Sep;33(9):917-31. Bowling A, Rowe G, Adams S, Sands P, Samsi K, Crane M, Joly L, Manthorpe J. Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales. Aging & mental health. 2015 Jan 2;19(1):13-31. |
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| Neurological | Cognition | Mild Cognitive Impairment Questionnaire | MCQ | UK | 2014 | To assess quality of life in mild cognitive impairment. | 13 | 2 | Emotional effects; Practical concerns | Yes | Dean K, Jenkinson C, Wilcock G, Walker Z. The development and validation of a patient-reported quality of life measure for people with mild cognitive impairment. International psychogeriatrics. 2014 Mar;26(3):487-97. Dean K, Walker Z, Jenkinson C. Data quality, floor and ceiling effects, and test–retest reliability of the mild cognitive impairment questionnaire. Patient related outcome measures. 2018 Jan 15:43-7. |
Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/mild-cognitive-impairment-… | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Dementia | Bath Assessment Of Quality of Life In Dementia | BASQID | UK | 2007 | To measure quality of life for people with mild- to moderate-stage dementia. | 14 | 2 | Satisfaction; Feeling or experience | Yes | Trigg R, Skevington SM, Jones RW. How can we best assess the quality of life of people with dementia? The Bath Assessment of Subjective Quality of Life in Dementia (BASQID). The Gerontologist. 2007 Dec 1;47(6):789-97. | No information | Unknown | Dr. Richard Trigg, Division of Psychology, Nottingham Trent University, Nottingham NG1 4BU, England. E-mail: Richard.trigg@ntu.ac.uk | Nil | Yes | Harding, A. J., Morbey, H., Ahmed, F., Opdebeeck, C., Elvish, R., Leroi, I., ... & Reilly, S. T. A core outcome set for nonpharmacological community-based interventions for people living with dementia at home: a systematic review of outcome measurement instruments. The Gerontologist. 2021;61(8):e435-e448. |
| Neurological | Dementia | Dementia Quality Of Life Instrument | D-QOL | USA | 1999 | To assess quality of life by direct interview with dementia patients. | 29 | 5 | Self-esteem; Positive affect/humour; Negative affect; Feelings of belonging; Sense of aesthetics | Yes | Brod M, Stewart AL, Sands L, Walton P. Conceptualization and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL). The Gerontologist. 1999 Feb 1;39(1):25-36. | Yes | Unknown | M Brod, Center for Clinical and Aging Services Research, Goldman Institute on Aging, San Francisco, CA 94118, USA. mbrod@gioa.org | Nil | Yes | Ettema, T. P., Dröes, R. M., Lange, J. D., Mellenbergh, G. J., & Ribbe, M. W. A review of quality of life instruments used in dementia. Quality of life research. 2005;14:675-686. |
| Neurological | Dementia | Measurement of health-related quality of life for people with dementia | DEMQOL | UK | 2005 | To measure health-related quality of life in dementia. | 28 | 5 | Health and wellbeing; Daily activities and looking after yourself; Cognitive functioning; Social relationships; Self-concept | Yes | Smith SC, Lamping DL, Banerjee S, Harwood R, Foley B, Smith P, Cook JC, Murray J, Prince M, Levin E, Mann A. Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technology Assessment (Winchester, England). 2005;9(10):1-iv. | Yes | Unknown | Prof Sube Banerjee, s.banerjee@bsms.ac.uk; https://www.bsms.ac.uk/research/clinical-neuroscience/cds/research/demq… | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Dementia | Neuropsychiatric Inventory | NPI-10 | USA | 1994 | To assess changes in the patient's behaviour that have appeared since the onset of the dementia. | 10 | 2 | Depression; Delusions | Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994 Dec;44(12):2308-2308. Wood S, Cummings JL, Hsu MA, Barclay T, Wheatley MV, Yarema KT, Schnelle JF. The use of the neuropsychiatric inventory in nursing home residents. Characterization and measurement. Am J Geriatr Psychiatry. 2000 Winter;8(1):75-83 Cummings J. The neuropsychiatric inventory: development and applications. Journal of geriatric psychiatry and neurology. 2020 Mar;33(2):73-84. |
Yes | Unknown | Jeffrey Cumming, cumminj@ccf.org | Nil | Yes | Gitlin LN, Marx KA, Stanley IH, Hansen BR, Van Haitsma KS. Assessing neuropsychiatric symptoms in people with dementia: a systematic review of measures. International psychogeriatrics. 2014 Nov;26(11):1805-48. Seignourel PJ, Kunik ME, Snow L, Wilson N, Stanley M. Anxiety in dementia: a critical review. Clinical psychology review. 2008 Oct 1;28(7):1071-82. |
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| Neurological | Epilepsy | Epilepsy Psycho-Social Effects Scale | EPSES | UK | 1990 | To determine the social effects of epilepsy and measure psychosocial functioning. | 42 | 14 | Acceptance of the diagnosis; Fear of having seizures; Fear of stigma affecting employment; Lack of confidence about the future; Lack of confidence about traveling; Adverse effect on social life; Adverse effect on leisure pursuits; Change of outlook on life/self; Difficult with the family; Attitudes to taking medication; Attitudes to teh medical profession; Depression or emotional reactions; Feelings of increased social isolation; Lack of energy/lethargy | Yes | Chaplin JE, Yepez R, Shorvon S, Floyd M. A quantitative approach to measuring the social effects of epilepsy. Neuroepidemiology. 1990 Jul 3;9(3):151-8. | No information | Unknown | J.E. Chaplin, Department of Systems Science, City University and INSEG (Institute of Neurology and National Society for Epilepsy Research Group), Institute of Neurology and Chalfont Centre for Epilepsy, London, UK | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Epilepsy | Impact Of Epilepsy Scale | Impact of Epilepsy Scale | UK | 1993 | To measure the impact of epilepsy. | 8 | 8 | Relationship with spouse/partner; Relationship with other close family members; Social life/social activities; Work; Health; Relationships with friends; Feelings about self; Plans and ambitions for the future | Yes | Jacoby A, Baker G, Smith D, Dewey M, Chadwick D. Measuring the impact of epilepsy: the development of a novel scale. Epilepsy research. 1993 Sep 1;16(1):83-8. | No information | Unknown | Ann Jacoby; Centre for Health Services Research. 21 Claremont Place, University of Newcastle upon Tyne, Newcastle upon Tyne NE2 4AA, UK | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Epilepsy | Liverpool Seizure Severity Scale | LSSS 2.0 | UK | 1991 | To quantify the patient's own perceptions of changes in seizure severity. | 12 | No specific domains/dimensions identified | Yes | Baker GA, Smith DF, Dewey M, Morrow J, Crawford PM, Chadwick DW. The development of a seizure severity scale as an outcome measure in epilepsy. Epilepsy Research. 1991 Apr 1;8(3):245-51. Baker GA, Smith DF, Jacoby A, Hayes JA, Chadwick DW. Liverpool seizure severity scale revisited. Seizure. 1998 Jun 1;7(3):201-5. |
PubliclYes available | Unknown | Jane Scott-Lennox, Piedmont Research Institute, Chapel Hill, NC, 27514, USA, Tel.: +1-919-+9331336; fax: +1-919-9334616 | Nil | Yes | Vergonjeanne, M., Auditeau, E., Thebaut, C., Boumediene, F., & Preux, P. M. Instruments for investigation of epilepsy in low-and middle-income countries: A systematic review. Epilepsy Research. 2022;180:106865. | |
| Neurological | Epilepsy | Neurological Disorders Depression Inventory-Epilepsy for Youth | NDDI-E-Y | USA | 2013 | To screen for depression in youth (12 to 17 years) with epilepsy. | 2 | No specific domains/dimensions identified | Yes | Wagner JL, Smith G, Ferguson PL, Fedele DA. Preliminary psychometrics of the neurological disorders depression inventory for epilepsy–youth. Journal of child neurology. 2013 Nov;28(11):1392-9. Wagner JL, Kellermann T, Mueller M, Smith G, Brooks B, Arnett A, Modi AC. Development and validation of the NDDI‐E‐Y: a screening tool for depressive symptoms in pediatric epilepsy. Epilepsia. 2016 Aug;57(8):1265-70. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/neurological-disorders-depression-inventory-for-epilepsy-youth-version | Nil | Yes | De Aveiro B, Winsor A, Davies J, Nicholson TR, Pal DK, Richardson MP, Pick S. Mental health and neurodevelopmental patient-reported outcome measures (PROMs) for children and young people with epilepsy: A systematic review. Epilepsy & Behavior. 2024 Apr 1;153:109671. | |
| Neurological | Epilepsy | Quality Of Life In Epilepsy | QOLIE-89 | USA | 1995 | To assess health-related quality of life of patients with epilepsy. | 89 | 17 | Seizure worry; Medication effects; Health perceptions; Health discouragement; Work/driving/social function; Language; Attention/concentration; Memory; Overall quality of life; Emotional wellbeing; Role limitations: Emotional; Role limitations: Physical; Social isolation; Social support; Energy/fatigue; Physical functioning; Pain | Yes | Devinsky O, Vickrey BG, Cramer J, Perrine K, Hermann B, Meador K, Hays RD. Development of the quality of life in epilepsy inventory. Epilepsia. 1995 Nov;36(11):1089-104. | Yes | Unknown | Copyright information: Rand - All translations: QOLIE Development Group | https://www.rand.org/health-care/surveys_tools/qolie.html | Yes | Cowan J, Baker GA. A review of subjective impact measures for use with children and adolescents with epilepsy. Quality of Life Research. 2004 Oct;13:1435-43. Stafford M, Gavriel S, Lloyd A. Patient-reported outcomes measurements in epilepsy. Expert Review of Pharmacoeconomics & Outcomes Research. 2007 Aug 1;7(4):373-84. |
| Neurological | Epilepsy | Quality Of Life In Newly Diagnosed Epilepsy (Newly Diagnosed Epilepsy Quality Of Life) | NEWQOL-6D | UK; USA | 2000 | To assess quality of life in recently diagnosed epilepsy patients. | 93 | 6 | Worry about seizures; Depression; Memory; Cognition; Stigmatism; Control | Yes | Abetz L, Jacoby A, Baker GA, McNulty P. Patient‐based assessments of quality of life in newly diagnosed epilepsy patients: validation of the NEWQOL. Epilepsia. 2000 Sep;41(9):1119-28. | Yes | Unknown | Linda Abetz, Linda.Abetz@adelphi.co.uk | Nil | Yes | Thompson K, Lo AH, McGlashan HL, Ownsworth T, Haslam C, Pegna A, Reutens DC. Measures of subjective memory for people with epilepsy: a systematic review of measurement properties. Neuropsychology Review. 2024 Mar;34(1):67-97. Nixon A, Kerr C, Breheny K, Wild D. Patient Reported Outcome (PRO) assessment in epilepsy: a review of epilepsy-specific PROs according to the Food and Drug Administration (FDA) regulatory requirements. Health and Quality of Life Outcomes. 2013 Dec;11:1-20. |
| Neurological | Epilepsy | Subjective Handicap Of Epilepsy | SHE | UK | 1998 | To assess the impact of epilepsy on individuals. | 32 | 6 | Work and activities; Social and personal; Self-perception; Physical; Life-satisfaction; Change | Yes | O'Donoghue MF, Duncan JS, Sander JW. The subjective handicap of epilepsy. A new approach to measuring treatment outcome. Brain: a journal of neurology. 1998 Feb 1;121(2):317-43. | No information | Unknown | M. F. O’Donoghue, Epilepsy Research Group/Neuroepidemiology, Institute of Neurology, London, England | Nil | Yes | Nixon A, Kerr C, Breheny K, Wild D. Patient Reported Outcome (PRO) assessment in epilepsy: a review of epilepsy-specific PROs according to the Food and Drug Administration (FDA) regulatory requirements. Health and Quality of Life Outcomes. 2013 Dec;11:1-20. Jones FJ, Ezzeddine FL, Herman ST, Buchhalter J, Fureman B, Moura LM. A feasibility assessment of functioning and quality-of-life patient-reported outcome measures in adult epilepsy clinics: A systematic review. Epilepsy & Behavior. 2020 Jan 1;102:106704. |
| Neurological | Epilepsy; Depression | Neurological Disorders Depression Inventory For Epilepsy | NDDI-E | USA | 2006 | To screen for major depression in people with epilepsy. | 6 | No specific domains/dimensions identified | Yes | Gilliam FG, Barry JJ, Hermann BP, Meador KJ, Vahle V, Kanner AM. Rapid detection of major depression in epilepsy: a multicentre study. The Lancet Neurology. 2006 May 1;5(5):399-405. | No information | Unknown | F G Gilliam, fgilliam@neuro.columbia.edu | Nil | Yes | De Aveiro B, Winsor A, Davies J, Nicholson TR, Pal DK, Richardson MP, Pick S. Mental health and neurodevelopmental patient-reported outcome measures (PROMs) for children and young people with epilepsy: A systematic review. Epilepsy & Behavior. 2024 Apr 1;153:109671. Nixon A, Kerr C, Breheny K, Wild D. Patient Reported Outcome (PRO) assessment in epilepsy: a review of epilepsy-specific PROs according to the Food and Drug Administration (FDA) regulatory requirements. Health and Quality of Life Outcomes. 2013 Dec;11:1-20. |
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| Neurological | Epilepsy; Other neurological conditions | Neurology Quality Of Life Measurement System | Neuro-QoL | USA | 2012 | Set of self-report measures that evaluates and monitors the physical, mental, and social effects experienced by adults and children living with neurological conditions. | 17 | 3 | Physical health; Social health; Mental health | Yes | Gershon RC, Lai JS, Bode R, Choi S, Moy C, Bleck T, Miller D, Peterman A, Cella D. Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Quality of Life Research. 2012 Apr;21:475-86. | Yes | Unknown | http://www.healthmeasures.net/explore-measurement-systems/neuro-qol | Nil | Yes | Hunt C, Zahid S, Ennis N, Michalak A, Masanic C, Vaidyanath C, Bhalerao S, Cusimano MD, Baker A. Quality of life measures in older adults after traumatic brain injury: a systematic review. Quality of life research. 2019 Dec;28:3137-51. Perez-Panero AJ, Ruiz-Munoz M, Fernandez-Torres R, Formosa C, Gatt A, Gonzalez-Sanchez M. Diabetic foot disease: a systematic literature review of patient-reported outcome measures. Quality of Life Research. 2021 Dec;30(12):3395-405. |
| Neurological | Migraine | Activity Impairment in Migraine Diary | AIM-D | USA | 2022 | To assess the effect of migraine. | 11 | 2 | Performance of daily activities; Physical impairment | Yes | Lipton RB, Gandhi P, Stokes J, Cala ML, Evans CJ, Knoble N, Gelhorn HL, Revicki D, Viswanathan HN, Dodick DW. Development and validation of a novel patient-reported outcome measure in people with episodic migraine and chronic migraine: The Activity Impairment in Migraine Diary. Headache. 2022 Jan;62(1):89-105 | No information | Unknown | Richard B. Lipton, Albert Einstein College of Medicine, Bronx, NY, USA; Email: richard.lipton@einsteinmed.org | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Migraine | Functional Assessment In Migraine Questionnaire | FAIM | USA | 2005 | To offer physicians a brief and valid method of measuring the impact of migraine on mental functioning and activity and participation. | 37 | 3 | Attention/Thought; Perception; Activity and participation | Yes | Pathak DS, Chisolm DJ, Weis KA. Functional Assessment in Migraine (FAIM) questionnaire: development of an instrument based upon the WHO's International Classification of Functioning, Disability, and Health. Value in health. 2005 Sep;8(5):591-600. | No information | Unknown | Deena J. Chisolm, Research Scientist, Columbus Children’s Research Institute and Department of Pediatrics, The Ohio State University, 700 Children’s Drive, Room J1412, Columbus, OH 43205, USA. E-mail: chisolmd@pediatrics.ohio-state.edu | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Migraine | Headache Impact Test 6-item™ | HIT-6™ | USA | 2003 | To assess the impact of headaches on people with frequent headaches. | 6 | No specific domains/dimensions identified | Yes | Kosinski M, Bayliss MS, Bjorner JB, Ware JE, Garber WH, Batenhorst A, Cady R, Dahlöf CG, Dowson A, Tepper S. A six-item short-form survey for measuring headache impact: The HIT-6™. Quality of life research. 2003 Dec;12:963-74. Bjorner JB, Kosinski M, Ware Jr JE. Using item response theory to calibrate the Headache Impact Test (HIT™) to the metric of traditional headache scales. Quality of Life Research. 2003 Dec;12:981-1002. |
Yes | Unknown | https://www.qualitymetric.com/health-surveys/the-headache-impact-test-hit-6/ | Nil | Yes | Haywood KL, Mars TS, Potter R, Patel S, Matharu M, Underwood M. Assessing the impact of headaches and the outcomes of treatment: a systematic review of patient-reported outcome measures (PROMs). Cephalalgia. 2018 Jun;38(7):1374-86. Mishra B, Sudheer P, Agarwal A, Srivastava MV, Vishnu VY. Minimal Clinically Important Difference (MCID) in Patient-Reported Outcome Measures for Neurological Conditions: Review of Concept and Methods. Annals of Indian Academy of Neurology. 2023 Jul 1;26(4):334-43. |
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| Neurological | Migraine | Migraine Disability Assessment | MIDAS | USA | 1999 | To quantify headache-related disability. | 33 | No specific domains/dimensions identified | Yes | Stewart WF, Lipton RB, Kolodner KB, Sawyer J, Lee C, Liberman JN. Validity of the Migraine Disability Assessment (MIDAS) score in comparison to a diary-based measure in a population sample of migraine sufferers. Pain 2000;88:41-52. Stewart WF, Lipton RB, Whyte J, Dowson A, Kolodner K, Liberman JN, Sawyer J. An international study to assess reliability of the Migraine Disability Assessment (MIDAS) score. Neurology. 1999 Sep 1;53(5):988-. |
PubliclYes available | Unknown | https://headaches.org/wp-content/uploads/2018/02/MIDAS.pdf | Yes | Haywood KL, Mars TS, Potter R, Patel S, Matharu M, Underwood M. Assessing the impact of headaches and the outcomes of treatment: a systematic review of patient-reported outcome measures (PROMs). Cephalalgia. 2018 Jun;38(7):1374-86. | ||
| Neurological | Migraine | Migraine Physical Function Impact Diary | MPFID | USA | 2017 | To evaluate the impact of migraine on physical functioning. | 13 | 2 | Impact on everyday activities; Physical impairment | Yes | Hareendran A, Mannix S, Skalicky A, Bayliss M, Blumenfeld A, Buse DC, Desai PR, Ortmeier BG, Sapra S. Development and exploration of the content validity of a patient-reported outcome measure to evaluate the impact of migraine-the migraine physical function impact diary (MPFID). Health and quality of life outcomes. 2017 Dec;15:1-0. Kawata AK, Hsieh R, Bender R, Shaffer S, Revicki DA, Bayliss M, Buse DC, Desai P, Sapra S, Ortmeier B, Hareendran A. Psychometric evaluation of a novel instrument assessing the impact of migraine on physical functioning: the migraine physical function impact diary. Headache: The Journal of Head and Face Pain. 2017 Oct;57(9):1385-98. |
Yes | Unknown | A Kawata, Ariane.Kawata@evidera.com | Nil | Yes | Cohen, Evan T. PT, NCS, MA, PhD; Matsuda, Patricia Noritake PT, DPT, PhD; Fritz, Nora E. PT, NCS, DPT, PhD; Allen, Diane D. PT, PhD; Yorke, Amy M. PT, NCS, PhD; Widener, Gail L. PT, PhD; Jewell, Sarah T. MLIS; Potter, Kirsten PT, MS, DPT. Self-Report Measures of Fatigue for People With Multiple Sclerosis: A Systematic Review. Journal of Neurologic Physical Therapy. 2024 Jan;48(1):p 6-14 |
| Neurological | Migraine | Migraine Quality of Life Questionnaire | MQoL | USA | 1995 | To assess impairment of quality of life in the 24-hour period following the onset of a migraine headache in clinical trials. | 15 | 5 | Work functioning; Social functioning; Energy/vitality; Migraine headache symptoms; Feelings and concerns | Yes | Hartmaier SL, Santanello NC, Epstein RS. Development of a brief 24-hour migraine-specific quality of life questionnaire. Headache. 1995 Jun;35(6):320-9. Santanello NC, Hartmaier SL, Epstein RS, Silberstein SD. Validation of a new quality of life questionnaire for acute migraine headache. Headache: The Journal of Head and Face Pain. 1995 Jun;35(6):330-7. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/migraine-quality-of-life-questionnaire | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Migraine | Migraine Specific Quality of Life Questionnaire | MSQoL | UK | 1998 | To assess needs-based quality of life of patients with migraine. | 20 | 3 | Avoidance behaviours; Relationships; Feelings | Yes | McKenna S, Doward L, Mackenzie Davey K. The Development and Psychometric Properties of the MSQoL, a migraine specific quality of life instrument. Clin Drug Invest. 1998 May;15(5):413–423. Patrick DL, Hurst BC, Hughes J. Further development and testing of the migraine‐specific quality of life (MSQOL) measure. Headache: The Journal of Head and Face Pain. 2000 Jul;40(7):550-60. |
Yes | Unknown | Stephen P. McKenna, Galen Research, Enterprise House, Manchester Science Park, Lloyd Street North, Manchester, M15 6SE, England | Nil | Yes | Haywood KL, Mars TS, Potter R, Patel S, Matharu M, Underwood M. Assessing the impact of headaches and the outcomes of treatment: a systematic review of patient-reported outcome measures (PROMs). Cephalalgia. 2018 Jun;38(7):1374-86. |
| Neurological | Migraine | Migraine-Specific Quality Of Life Questionnaire | MSQ | USA | 1998 | To assess quality of life related to migraine. | 16 | 3 | Role function-restrictive; Role function-preventive; Emotional function | Yes | Jhingran P, Osterhaus JT, Miller DW, Lee JT, Kirchdoerfer L. Development and validation of the migraine‐specific quality of life questionnaire. Headache: the journal of head and face pain. 1998 Apr;38(4):295-302. |
Yes | Unknown | F G Gilliam, fgilliam@neuro.columbia.edu | Nil | Yes | Haywood KL, Mars TS, Potter R, Patel S, Matharu M, Underwood M. Assessing the impact of headaches and the outcomes of treatment: a systematic review of patient-reported outcome measures (PROMs). Cephalalgia. 2018 Jun;38(7):1374-86. |
| Neurological | Migraine | Migraine-Specific Quality-of-Life Questionnaire, Version 2.1 | MSQ v2.1 | USA | 2000 | To assess quality of life related to migraine. | 14 | 3 | Role function-restrictive; Role function-preventive; Emotional function | Yes | Martin BC, Pathak DS, Sharfman MI, Adelman JU, Taylor F, Kwong WJ, Jhingran P. Validity and Reliability of the Migraine-Specific Quality of Life Questionnaire (MSQ Version 2.1). Headache 2000; 40:204-216. Rendas-Baum R, Bloudek LM, Maglinte GA, Varon SF. The psychometric properties of the Migraine-Specific Quality of Life Questionnaire version 2.1 (MSQ) in chronic migraine patients. Quality of Life Research. 2013 Jun;22:1123-33. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/migraine-specific-quality-of-life-questionnaire | Nil | Yes | Haywood KL, Mars TS, Potter R, Patel S, Matharu M, Underwood M. Assessing the impact of headaches and the outcomes of treatment: a systematic review of patient-reported outcome measures (PROMs). Cephalalgia. 2018 Jun;38(7):1374-86. |
| Neurological | Migraine | Patient Perception Of Migraine Questionnaire | PPMQ | USA | 2002 | To measure patient’s satisfaction with acute migraine treatment. | 15 | No specific domains/dimensions identified | Yes | Davis KH, Black L, Sleath B. Validation of the patient perception of migraine questionnaire. Value in Health. 2002 Sep 1;5(5):422-30. Revicki DA, Kimel M, Beusterien K, Kwong JW, Varner JA, Ames MH, Mahajan S, Cady RK. Validation of the revised Patient Perception of Migraine Questionnaire: measuring satisfaction with acute migraine treatment. Headache: The Journal of Head and Face Pain. 2006 Feb;46(2):240-52. |
Yes | Unknown | Kimberly Hunt Davis, MS, Global Health Outcomes, GlaxoSmithKline, PO Box 13398, Research Triangle Park, NC 27709-3398. E-mail: khd64468@gsk.com | Nil | Yes | Haywood KL, Mars TS, Potter R, Patel S, Matharu M, Underwood M. Assessing the impact of headaches and the outcomes of treatment: a systematic review of patient-reported outcome measures (PROMs). Cephalalgia. 2018 Jun;38(7):1374-86. James KA, Cadel L, Hitzig SL, Guilcher SJ. Patient-reported outcome measures for medication-related quality of life: A scoping review. Research in Social and Administrative Pharmacy. 2022 Sep 1;18(9):3501-23. |
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| Neurological | Migraine | Vestibular Migraine Patient Assessment Tool and Handicap Inventory | VM-PATHI | USA | 2020 | To assess disease severity in those with vestibular migraine. | 25 | 6 | Cognition; Emotion/sense of being overwhelmed; Disequilibrium/central audiovestibular disturbance; Anxiety; Motion sensitivity; Headache equivalents | Yes | Sharon JD, Krauter R, Kirk L, Pasquesi L, Allen IE, Formeister EJ, Michael RL, Levin M. Development and validation of VM-PATHI: vestibular migraine patient assessment tool and handicap inventory. Otology & Neurotology. 2020 Apr 1;41(4):e494-500. | No information | Unknown | Jeffrey Sharon, Department of Otolaryngology—Head and Neck Surgery; yDepartment of Epidemiology and Biostatistics; and zDepartment of Neurology, University of California, San Francisco, California, USA |
Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Multiple Sclerosis, Stroke, Parkinson's disease | Neuro-Qol | Neuro-Qol | USA | 2011 | To assess health related quality of life in adults and children with neurological disorders. | 19 to 45 | 17 | Anxiety; Depression; Anger; Fatigue; Upper Extremity Function; Lower Extremity Function; Cognitive Function; Emotional and Behavioural Dyscontrol; Positive Affect and Well-Being; Sleep Disturbance; Ability to Participate in Social Roles and Activities; Satisfaction with Social Roles and Activities; Social Relations - Interaction with Peers; Social Relations- Interaction with Adults; Stigma; Pain; Communication; End of Life Concerns; Bowel Function; Urinary/Bladder Function; Sexual Function | Yes | Cella D, Nowinski C, Peterman A, Victorson D, Miller D, Lai JS, Moy C. The neurology quality-of-life measurement initiative. Arch Phys Med Rehabil. 2011 Oct;92(10 Suppl):S28-36 | Yes | Unknown | https://www.healthmeasures.net/explore-measurement-systems/neuro-qol | Nil | Yes | Berardi A, Regoli E, Tofani M, Valente D, Fabbrini G, Fabbrini A, Ruggieri M, Panuccio F, Galeoto G. Tools to assess the quality of life in patients with Parkinson’s disease: A systematic review. Expert Review of Pharmacoeconomics & Outcomes Research. 2021 Jan 2;21(1):55-68. |
| Neurological | Parkinson's disease | Communicative Effectiveness Survey | CES | USA | 2008 | To provide preliminary evidence of the construct validity of the Communicative Effectiveness Survey for individuals with dysarthria and idiopathic Parkinson’s disease. | 8 | No specific domains/dimensions identified | Yes | Donovan NJ, Velozo CA, Rosenbek JC. The Communicative Effectiveness Survey: Investigating its item-level psychometric properties. Journal of Medical Speech-Language Pathology. 2007 Dec 1;15(4):433-48. Donovan NJ, Kendall DL, Young ME, Rosenbek JC. The communicative effectiveness survey: preliminary evidence of construct validity. American Journal of Speech-Language Pathology. 2008; 17: 335-347. |
No information | Unknown | Neila J. Donovan, Louisiana State University, Department of Communication Sciences and Disorders, 72 Hatcher Hall, Baton Rouge, LA 70803. E-mail: ndonovan@lsu.edu. | Nil | None identified in March 2025 | None identified in March 2025 | |
| Neurological | Parkinson's disease | Cortical Basal ganglia Functional Scale | CBFS | Canada | 2020 | To evaluate experiences in daily living, behavioural, language, and cognitive impairments in patients with 4 repeat tauopathies. | 31 | 2 | Yes | Lang AE, Stebbins GT, Wang P, Jabbari E, Lamb R, Morris H, Boxer AL. The Cortical Basal ganglia Functional Scale (CBFS): Development and preliminary validation. Parkinsonism & Related Disorders. Volume 79, October 2020; 121-126. | Yes | Unknown | https://www.movementdisorders.org/MDS/MDS-Rating-Scales/Cortical-Basal-ganglia-Functional-Scale-CBFS.htm | Nil | None identified in March 2025 | None identified in March 2025 | |
| Neurological | Parkinson's disease | Freezing of Gait Questionnaire | FOG-Q | Israel | 2009 | To assess freezing of gait and walking among patients with Parkinson Disease. | 6 | No specific domains/dimensions identified | Yes | Giladi N, Shabtai H, Simon ES, Biran S, Tal J, Korczyn AD. Construction of freezing of gait questionnaire for patients with Parkinsonism. Parkinsonism Relat Disord. 2000 Jul 1;6(3):165-170. Giladi N, Tal J, Azulay T, Rascol O, Brooks DJ, Melamed E, Oertel W, Poewe WH, Stocchi F, Tolosa E. Validation of the freezing of gait questionnaire in patients with Parkinson's disease. Movement disorders: official journal of the Movement Disorder Society. 2009 Apr 15;24(5):655-61. |
Yes | Unknown | Copyright held by Pr Nir Giladi, Movement Disorders Unit, Department of Neurology, Tel-Aviv Sourasky Medical Center, Sackler School of Medicine, Tel Aviv University, Tel Aviv, Israel; ngiladi@tasmc.health.gov.il | Nil | Yes | Bloem BR, Marinus J, Almeida Q, Dibble L, Nieuwboer A, Post B, Ruzicka E, Goetz C, Stebbins G, Martinez‐Martin P, Schrag A. M easurement instruments to assess posture, gait, and balance in P arkinson's disease: Critique and recommendations. Movement Disorders. 2016 Sep;31(9):1342-55. | |
| Neurological | Parkinson's disease | Parkinson's Disease Home Diary | PD Home Diary | USA | 2004 | To assess functional status in patients with Parkinson's disease with motor fluctuations and dyskinesia, completed very 30 minutes over the course of the day (and on waking for overnight). | 6 | No specific domains/dimensions identified | Yes | Hauser RA, Friedlander J, Zesiewicz TA, Adler CH, Seeberger LC, O'Brien CF, Molho ES, Factor SA. A home diary to assess functional status in patients with Parkinson's disease with motor fluctuations and dyskinesia. Clin Neuropharmacol. 2000 Mar-Apr;23(2):75-81. Hauser RA, Deckers F, Lehert P. Parkinson's disease home diary: further validation and implications for clinical trials. Movement Disorders. 2004 Dec;19(12):1409-13. |
Yes | Unknown | Robert A. Hauser, Parkinson's Disease and Movement Disorders Center, 4 Columbia Drive, Suite 410, Tampa, FL 33606, USA. | Nil | None identified in March 2025 | None identified in March 2025 | |
| Neurological | Parkinson's disease | Parkinson's Disease Quality Of Life Questionnaire | PDQ | UK | 1995 | To assess the health-related quality of life in Parkinson's disease patients. | 39 | 8 | Mobility; Activities of daily living; Emotional wellbeing; Stigma; Social support; Cognitions; Communication; Bodily discomfort | Yes | Peto V, Jenkinson C, Fitzpatrick R, Greenhall R. The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease. Quality of life research. 1995 Jun;4:241-8. Peto V, Jenkinson C, Fitzpatrick R. PDQ-39: a review of the development, validation and application of a Parkinson’s disease quality of life questionnaire and its associated measures. Journal of neurology. 1998 Apr;245:S10-4. |
Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/parkinsons-disease-questio… | Nil | Yes | Marinus J, Ramaker C, van Hilten JJ, Stiggelbout A. Health related quality of life in Parkinson's disease: a systematic review of disease specific instruments. Journal of neurology, neurosurgery & psychiatry. 2002 Feb 1;72(2):241-8. Xin Y, McIntosh E. Assessment of the construct validity and responsiveness of preference-based quality of life measures in people with Parkinson’s: a systematic review. Quality of Life Research. 2017 Jan;26:1-23. |
| Neurological | Parkinson's disease | Parkinson's Disease Quality of Life Scale | PDQUALIF | USA | 2003 | To assess health-related quality of life in Parkinson's disease patients. | 33 | 7 | Social/role function; Self-image/sexuality; Sleep; Outlook; Physical function; Independence; Urinary function | Yes | Welsh M, McDermott MP, Holloway RG, Plumb S, Pfeiffer R, Hubble J; Parkinson Study Group. Development and testing of the Parkinson's disease quality of life scale. Mov Disord. 2003 Jun;18(6):637-45. | Yes | Unknown | Robert G. Holloway, bholloway@mct.rochester.edu, Department of Neurology, University of Rochester, Rochester, New York, USA | Nil | Yes | Xin Y, McIntosh E. Assessment of the construct validity and responsiveness of preference-based quality of life measures in people with Parkinson’s: a systematic review. Quality of Life Research. 2017 Jan;26:1-23. |
| Neurological | Parkinson's disease | Parkinson's Disease Questionnaire | PDQ-39 | UK | 1995 | To assess the health-related quality of life in Parkinson's disease patients. | 39 | 8 | Mobility; ADL; Emotional well-being; Stigma; Social support; Cognition; Communication; Bodily discomfort | Yes | Peto V, Jenkinson C, Fitzpatrick R, Greenhall R. The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease. Qual Life Res. 1995 Jun;4(3):241-8. Jenkinson C, Fitzpatrick RA, Peto VI, Greenhall R, Hyman N. The Parkinson's Disease Questionnaire (PDQ-39): development and validation of a Parkinson's disease summary index score. Age and ageing. 1997 Sep 1;26(5):353-7. |
Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/parkinsons-disease-questio… | Nil | Yes | Marinus J, Ramaker C, van Hilten JJ, Stiggelbout A. Health related quality of life in Parkinson's disease: a systematic review of disease specific instruments. Journal of neurology, neurosurgery & psychiatry. 2002 Feb 1;72(2):241-8. |
| Neurological | Parkinson's disease | Parkinson’s Disease Questionnaire – Exercise | PDQ-Exercise | UK | 2021 | To assess the efficacy of exercise therapy for people with Parkinson's Disease. | 10 | No specific domains/dimensions identified | Yes | Morley D, Dummett S, Kelly L, Jenkinson C. Development of an Exercise-Specific Parkinson's Disease Questionnaire: The PDQ-Exercise. Mov Disord. 2021 Sep;36(9):2156-2161 | Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/parkinsons-disease-exercis… | Nil | None identified in March 2025 | None identified in March 2025 | |
| Neurological | Parkinson's disease | Parkinson's Disease Sleep Scale, Revised version | PDSS-2 | Germany | 2011 | To characterise and quantify the various aspects of nocturnal sleep problems in Parkinson's disease. | 15 | 3 | Motor symptoms at night; PD symptoms at night; Disturbed sleep | Yes | Chaudhuri KR, Pal S, DiMarco A, Whately-Smith C, Bridgman K, Mathew R, Pezzela FR, Forbes A, Högl B, Trenkwalder C. The Parkinson's disease sleep scale: a new instrument for assessing sleep and nocturnal disability in Parkinson's disease. J Neurol Neurosurg Psychiatry. 2002 Dec;73(6):629-35. Trenkwalder C, Kohnen R, Högl B, Metta V, Sixel‐Döring F, Frauscher B, Hülsmann J, Martinez‐Martin P, Chaudhuri KR. Parkinson's disease sleep scale—validation of the revised version PDSS‐2. Movement Disorders. 2011 Mar;26(4):644-52. |
Yes | Unknown | Licencing information: PDSS-2 © Ray Chaudhuri, Claudia Trenkwalder 2010. All Rights Reserved; Contact: https://eprovide.mapi-trust.org/instruments/parkinson-s-disease-sleep-s… | Nil | None identified in March 2025 | None identified in March 2025 |
| Neurological | Parkinson's disease | Parkinson's Impact Scale | PIMS | Canada | 2003 | To measure the impact of Parkinson's disease on 10 aspects of a patient's emotional, social and economic life. | 10 | 4 | Physical; Psychological; Social; Sexuality | Yes | Calne SM, Mak E, Hall J, Fortin MJ, King P, McInnes G, Grantier L, Trecartin S, Schulzer M. Validating a quality-of-life scale in caregivers of patients with Parkinson's disease: Parkinson's Impact Scale (PIMS). Adv Neurol. 2003;91:115-22. Schulzer M, Mak E, Calne SM. The psychometric properties of the Parkinson's Impact Scale (PIMS) as a measure of quality of life in Parkinson's disease. Parkinsonism & Related Disorders. 2003 Jun 1;9(5):291-4. |
PubliclYes available | Unknown | Calne S, Schulzer M, Mak E, Guyette C, Rohs G, Hatchard S, Murphy D, Hodder J, Gagnon C, Weatherby S, Beaudet L. Validating a quality of life rating scale for idiopathic parkinsonism: Parkinson's Impact Scale (PIMS). Parkinsonism S. Calne, Neurodegenerative Disorders Centre, University of British Columbia, 2221 Wesbrook Mall, Vancouver, B.C., Canada V6T 2B5. | https://www.researchgate.net/profile/Susan-Calne/publication/5262636_Validating_a_Quality_of_Life_Rating_Scale_for_Idiopathic_Parkinsonism_Parkinson%27s_Impact_Scale_PIMS/links/5ab11709a6fdcc1bc0bfbcd0/Validating-a-Quality-of-Life-Rating-Scale-for-Idiopathic-Parkinsonism-Parkinsons-Impact-Scale-PIMS.pdf | Yes | Den Oudsten BL, Van Heck GL, De Vries J. The suitability of patient‐based measures in the field of Parkinson's disease: a systematic review. Movement disorders: official journal of the Movement Disorder Society. 2007 Jul 30;22(10):1390-401. Serrano‐Dueñas M, Calero B, Serrano S, Serrano M, Coronel P. Metric properties of the mini‐mental Parkinson and SCOPA‐COG scales for rating cognitive deterioration in Parkinson's disease. Movement Disorders. 2010 Nov 15;25(15):2555-62. |
| Neurological | Parkinson's disease | Quality of Life in Essential Tremor Questionnaire | QUEST | USA | 2005 | To measure quality of life for patients with Essential Tremor. | 30 | 5 | Physical/ADL; Psychosocial; Communication; Hobbies/Leisure; Work/Finances | Yes | Tröster AI, Pahwa R, Fields JA, Tanner CM, Lyons KE. Quality of life in Essential Tremor Questionnaire (QUEST): development and initial validation. Parkinsonism & related disorders. 2005 Sep 1;11(6):367-73 | Yes | Unknown | https://www.movementdisorders.org/MDS/MDS-Rating-Scales/Quality-of-Life… | https://www.movementdisorders.org/MDS/MDS-Rating-Scales/Quality-of-Life-in-Essential-Tremor-Questionnaire-QUEST.htm | Yes | Mishra B, Sudheer P, Rajan R, Agarwal A, Srivastava MP, Nilima N, Vishnu VY. Bridging the gap between statistical significance and clinical relevance: A systematic review of minimum clinically important difference (MCID) thresholds of scales reported in movement disorders research. Heliyon. 2024 Mar 15;10(5). |
| Neurological | Parkinson's disease | Starkstein Apathy Scale | SAS | USA | 1992 | To measure the severity of apathetic symptoms. | 14 | No specific domains/dimensions identified | Yes | Starkstein SE, Preziosi TJ, Bolduc PL, Robinson RG. Depression in Parkinson's disease. J Nerv Ment Dis. 1990 Jan;178(1):27-31. Starkstein SE, Mayberg HS, Preziosi T, Andrezejewski P, Leiguarda R, Robinson RG. Reliability, validity, and clinical correlates of apathy in Parkinson’s disease. J Neuropsychiatry Clin Neurosci. 1992 May;4(2):134-9. |
PubliclYes available | Unknown | https://citeseerx.ist.psu.edu/document?repid=rep1&type=pdf&doi=789d3f115223684f59b0b537aecf094c81788576 | None identified in March 2025 | None identified in March 2025 | ||
| Neurological | Parkinson's disease | Swallowing Disturbance Questionnaire | SDQ | Israel | 2007 | To assess dysphagia in patients with Parkinson's disease. | 15 | No specific domains/dimensions identified | Yes | Manor Y, Giladi N, Cohen A, Fliss DM, Cohen JT. Validation of a swallowing disturbance questionnaire for detecting dysphagia in patients with Parkinson's disease. Mov Disord. 2007 Oct 15;22(13):1917-21 | No information | Unknown | https://stanfordhealthcare.org/content/dam/SHC/clinics/outpatient-neurologic-rehabilitation-program/docs/mbs-the-swallowing-disturbance-questionnaire.pdf | Yes | Keage M, Delatycki M, Corben L, Vogel A. A systematic review of self-reported swallowing assessments in progressive neurological disorders. Dysphagia. 2015 Feb;30:27-46. | ||
| Neurological | Parkinson's disease, caregiver | Parkinson's Disease Questionnaire for Carer | PDQ-Carer | UK | 2012 | To assess the impact of Parkinson's disease on carers' quality of life. | 29 | 4 | Social and Personal Activities; Anxiety and Depression; Self care; Strain | Yes | Jenkinson C, Dummett S, Kelly L, Peters M, Dawson J, Morley D, Fitzpatrick R. The development and validation of a quality of life measure for the carers of people with Parkinson’s disease (the PDQ-Carer). Parkinsonism & related disorders. 2012 Jun 1;18(5):483-7. Morley D, Dummett S, Kelly L, Peters M, Dawson J, Fitzpatrick R, Jenkinson C. The PDQ-Carer: development and validation of a summary index score. Parkinsonism & related disorders. 2013 Apr 1;19(4):448-9. |
Yes | Unknown | Licencing information: Parkinson's Disease Questionnaire for Carer © 2011 Oxford University Innovation Ltd | https://www.sciencedirect.com/science/article/pii/S1353802012000259?cas… | None identified in March 2025 | None identified in March 2025 |
| Oral | Oral health | Child Oral Health Impact Profile | COHIP | USA | 2007 | To assess oral-facial wellbeing in school-age children, as reported by them or a caregiver completing a proxy report. | 34 | 5 | Oral health; Functional wellbeing; Social/emotional wellbeing; School environment; Self image | Yes | Broder HL, McGrath C, Cisneros GJ. Questionnaire development: face validity and item impact testing of the Child Oral Health Impact Profile. Community Dent Oral Epidemiol. 2007 Aug;35 Suppl 1:8-19 | No information | Unknown | Hillary L. Broder, broder@umdnj.edu | Yes | Yang C, Crystal YO, Ruff RR, Veitz-Keenan A, McGowan RC, Niederman R. Quality Appraisal of Child Oral Health–Related Quality of Life Measures: A Scoping Review. JDR Clinical & Translational Research. 2020 Apr;5(2):109-17. | |
| Oral | Oral health | Critical Care Units Oral Health-related Quality of Life | CCU-OHQoL | UK | 2020 | To assess oral health-related quality of life in in patients admitted to critical care units. | 21 | 5 | Functional limitations; Psychosocial impact; Xerostomia; Self-care | Yes | Moreno Sancho F, Tsakos G, Brealey D, Boniface D, Needleman I. Development of a tool to assess oral health-related quality of life in patients hospitalised in critical care. Qual Life Res. 2020 Feb;29(2):559-568. | No information | Unknown | f.moreno.12@ucl.ac.uk | https://static-content.springer.com/esm/art%3A10.1007%2Fs11136-019-02335-1/MediaObjects/11136_2019_2335_MOESM4_ESM.pdf | Yes | Riva F, Seoane M, Reichenheim ME, Tsakos G, Celeste RK. Adult oral health‐related quality of life instruments: a systematic review. Community dentistry and oral epidemiology. 2022 Oct;50(5):333-8. |
| Oral | Oral health | Geriatric Oral Health Assessment Index | GOHAI | USA | 1990 | To measure oral health status in older adults over the previous three months. | 12 | No specific domains/dimensions identified | Yes | Atchison KA, Dolan TA. Development of the geriatric oral health assessment index. Journal of dental education. 1990 Nov;54(11):680-7. Kressin NR, Atchison KA, Miller DR. Comparing the impact of oral disease in two populations of older adults: application of the geriatric oral health assessment index. Journal of public health dentistry. 1997 Dec;57(4):224-32. |
Yes | Unknown | https://tdg.ucla.edu/sites/default/files/GOHAI_final.pdf | https://onlinelibrary.wiley.com/doi/epdf/10.1111/j.1752-7325.1997.tb029… | Yes | Thapa R, Chimoriya R, Arora A. The development and psychometric properties of oral health assessment instruments used by non-dental professionals for nursing home residents: a systematic review. BMC geriatrics. 2021 Dec;21:1-6. Deana NF, Pardo Y, Ferrer M, Espinoza-Espinoza G, Garin O, Muñoz-Millán P, Atala-Acevedo C, Pont À, Cancino M, Zaror C. Evaluating conceptual model measurement and psychometric properties of Oral health-related quality of life instruments available for older adults: a systematic review. Health and Quality of Life Outcomes. 2024 Jan 13;22(1):5. |
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| Oral | Oral health | Oral Health Impact Profile | OHIP | Australia | 1994 | To assess dysfunction, discomfort, and disability attributed to oral conditions. | 49 | 7 | Functional limitation; Physical pain; Psychological discomfort; Physical disability; Psychological disability; Social disability; Handicap | Yes | Slade GD, Spencer AJ. Development and evaluation of the oral health impact profile. Community dental health. 1994 Mar 1;11(1):3-11. Slade GD. Derivation and validation of a short‐form oral health impact profile. Community dentistry and oral epidemiology. 1997 Aug;25(4):284-90. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/oral-health-impact-profile-14-items; Copyright information not found for original 49-item version. | Nil | Yes | Ning W, Schmalz G, Li P, Huang S. Oral health‐related quality of life in patients with osteoarthritis of the temporomandibular joint—Results of a systematic review. Journal of Oral Rehabilitation. 2022 Nov;49(11):1106-14. In’t Veld M, Jager DH, Chhangur CN, Ziesemer KA, Leusink FK, Schulten EA. Oral-functioning questionnaires in patients with head and neck cancer: A scoping review. Journal of Clinical Medicine. 2023 Jun 10;12(12):3964. |
| Oral | Oral health | Oral Impacts on Daily Performances Index - modified version | OIDP | Greece; UK | 2001 | To measure the frequency and severity of oral impacts that seriously affect a person's daily life in the last 6-months. | 10 | No specific domains/dimensions identified | Yes | Tsakos G, Marcenes W, and Sheiham A. Evaluation of a modified version of the index of Oral Impacts on Daily Performances (OIDP) in elderly populations in two European countries. Gerodontology. 2001;18(2):121-130 Yusuf H, Gherunpong S, Sheiham A, Tsakos G. Validation of an English version of the Child-OIDP index, an oral health-related quality of life measure for children. Health Qual Life Outcomes. 2006;4:38. |
No information | Unknown | Georgios Tsakos, g.tsakos@ucl.ac.uk | Nil | Yes | Hebling E, Pereira AC. Oral health‐related quality of life: a critical appraisalof assessment tools used in elderly people. Gerodontology. 2007 Sep;24(3):151-61. Riva F, Seoane M, Reichenheim ME, Tsakos G, Celeste RK. Adult oral health‐related quality of life instruments: a systematic review. Community dentistry and oral epidemiology. 2022 Oct;50(5):333-8. |
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| Oral | Oral health | Subjective Oral Health Status Indicators | SOHSI | Canada | 1994 | To measure the functional, social and psychological outcomes of oral disorders and conditions. | 43 | 8 | Chewing capacity; Ability to speak clearly; Oral and facial pain symptoms; Other oral symptoms; Social and psychological impact of oral disorders (Problems with eating; Problems with communication/social relations; Other limitations in daily activities; Worry and concern about oral health) | Yes | Locker D, Miller Y. Evaluation of subjective oral health status indicators. Journal of public health dentistry. 1994 Jun;54(3):167-76. Locker D. Subjective oral health status indicators. In; G D Slade. Measuring oral health and quality of life. University of North Carolina-Chapel Hill, NC: Agency for Health Care Policy and National Institute of Dental Research; 1997;105-12. |
No information | Unknown | D Locker, dlocker@dental.utoronto.ca | Nil | Yes | Hebling E, Pereira AC. Oral health‐related quality of life: a critical appraisalof assessment tools used in elderly people. Gerodontology. 2007 Sep;24(3):151-61. Riva F, Seoane M, Reichenheim ME, Tsakos G, Celeste RK. Adult oral health‐related quality of life instruments: a systematic review. Community dentistry and oral epidemiology. 2022 Oct;50(5):333-8. |
| Oral | Recurrent aphthous stomatitis | UK Oral Health Related Quality Of Life Measure | OHQOL-UK | UK | 2001 | To measure the impact of oral health on quality of life. | 16 | 3 | Physical aspects; Social aspects; Psychological aspects | Yes | McGrath C, Bediº R. An evaluation of a new measure of oral health related quality of life-OHQoL-UK (W) º. Community dental health. 2001;18:138-43. | Yes | Unknown | C P McGrath, mcgrathc@hku.hk | Nil | Yes | Mittal H, John MT, Sekulić S, Theis-Mahon N, Rener-Sitar K. Patient-reported outcome measures for adult dental patients: a systematic review. Journal of Evidence Based Dental Practice. 2019 Mar 1;19(1):53-70. |
| Reproductive and maternal | Breast feeding | Breastfeeding Self-Efficacy Scale | BSES | Canada | 1999 | To measure a mother's confidence in her ability to breastfeed. | 33 | 3 | Confidence in breastfeeding skills; Managing challenges; Sustaining breastfeeding | Yes | Dennis CL, Faux S. Development and psychometric testing of the Breastfeeding Self‐Efficacy Scale. Research in nursing & health. 1999 Oct;22(5):399-409. | Yes | Unknown | Cindy-Lee Dennis, University of Toronto, Faculty of Nursing, University of Toronto, 50 St. George Street, Toronto, ON M5S 3H4, Canada | Nil | None identified in March 2025 | None identified in March 2025 |
| Reproductive and maternal | Breast feeding | Neonatal Eating Assessment Tool | NeoEAT | USA | 2018 | To identify feeding difficulties in infants. | 68 | 7 | Mixed feeding version: Gastrointestinal tract function; Infant regulation; Energy and physiological stability; Sensory responsiveness; Feeding flexibility | Pados BF, Thoyre SM, Estrem HH, Park J, McComish C. Factor structure and psychometric properties of the Neonatal Eating Assessment Tool–Breastfeeding. Journal of Obstetric, Gynecologic & Neonatal Nursing. 2018 May 1;47(3):396-414. Pados BF, Thoyre SM, Estrem HH, Park J, McComish C. Factor structure and psychometric properties of the neonatal eating assessment tool—bottle-feeding (NeoEAT—Bottle-Feeding). Advances in Neonatal Care. 2018 Jun 1;18(3):232-42. Pados BF, Thoyre SM, Galer K. Neonatal eating assessment tool-mixed breastfeeding and bottle-feeding (NeoEAT-mixed feeding): factor analysis and psychometric properties. Maternal Health, Neonatology and Perinatology. 2019 Dec;5:1-5. |
Yes | Unknown | https://www.infantfeedingcare.com/neoeat | Nil | None identified in March 2025 | None identified in March 2025 | |
| Reproductive and maternal | Conceptive counselling | Person-Centered Contraceptive Counseling | PCCC | USA | 2021 | To assess the person-centredness of family planning advice provided to reproductive age females. | 4 | No specific domains/dimensions identified | Yes | Dehlendorf C, Fox E, Silverstein IA, Hoffman A, Campora Pérez MP, Holt K, Reed R, Hessler D. Development of the Person-Centered Contraceptive Counseling scale (PCCC), a short form of the Interpersonal Quality of Family Planning care scale. Contraception. 2021 May;103(5):310-315. doi: 10.1016/j.contraception.2021.01.008. Epub 2021 Jan 27. PMID: 33508252. | Yes | Unknown | Copyright information: The Regents of the University of California; Email: pccc@ucsf.edu | https://pcccmeasure.ucsf.edu/ | None identified in March 2025 | None identified in March 2025 | |
| Reproductive and maternal | Dysmenorrhea | Dysmenorrhea Daily Diary | DysDD | USA; Australia; New Zealand; Mexico; South Africa; multiple sites in South America and Europe | 2017 | To assess the symptoms (e.g., menstrual bleeding, pelvic pain) and impacts of dysmenorrhea on the daily life of patients over a 24-hour period-as a diary, it should be administered daily. | 10 | No specific domains/dimensions identified | Yes | Nguyen AM, Arbuckle R, Korver T, Chen F, Taylor B, Turnbull A, Norquist JM. Psychometric validation of the dysmenorrhea daily diary (DysDD): a patient-reported outcome for dysmenorrhea. Quality of Life Research. 2017 Aug;26:2041-55. | Yes | Yes, fees may apply | https://eprovide.mapi-trust.org/instruments/dysmenorrhea-daily-diary | Nil | Yes | de Arruda GT, Driusso P, de Godoy AG, de Sousa AP, Avila MA. Measurement properties of patient‐reported outcome measures for women with dysmenorrhea: A systematic review. Journal of Clinical Nursing. 2024 May 26. Piontek K, Gabes M, Kann G, Fechtner M, Apfelbacher C. Quality of patient-reported outcome measures for primary dysmenorrhea: a systematic review. Quality of Life Research. 2024 Jan;33(1):31-43. |
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| Reproductive and maternal | Dysmenorrhea | Dysmenorrhea symptom interference scale | DSI | USA | 2021 | To measure the extent symptoms interfere with daily activities in dysmenorrhea adolescent girls and adult women. | 9 | No specific domains/dimensions identified | Yes | Chen CX, Murphy T, Ofner S, Yahng L, Krombach P, LaPradd M, Bakoyannis G, Carpenter JS. Development and Testing of the Dysmenorrhea Symptom Interference (DSI) Scale. West J Nurs Res. 2021 Apr;43(4):364-373 | Yes | Yes, fees may apply | https://eprovide.mapi-trust.org/instruments/dysmenorrhea-symptom-interference-scale | Nil | Yes | de Arruda GT, Driusso P, de Godoy AG, de Sousa AP, Avila MA. Measurement properties of patient‐reported outcome measures for women with dysmenorrhea: A systematic review. Journal of Clinical Nursing. 2024 May 26. Piontek K, Gabes M, Kann G, Fechtner M, Apfelbacher C. Quality of patient-reported outcome measures for primary dysmenorrhea: a systematic review. Quality of Life Research. 2024 Jan;33(1):31-43. |
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| Reproductive and maternal | Endometriosis | ENDOCARE questionnaire | ECQ | The Netherlands; Italy; UK | 2011 | To assess patient-centred endometriosis care. | 38 | 9 | Respect for patients' values, preferences and expressed needs; Information, communication and education; Physical comfort; Emotional support and alleviation of fear and anxiety; Involvement of family and friends; Continuity and transition; Access to care; Technical skills; Endometriosis clinic staff | Yes | Dancet EA, Ameye L, Sermeus W, Welkenhuysen M, Nelen WL, Tully L, De Bie B, Veit J, Vedsted-Hansen H, Zondervan KT, De Cicco C, Kremer JA, Timmerman D, D'Hooghe TM. The ENDOCARE questionnaire (ECQ): a valid and reliable instrument to measure the patient-centeredness of endometriosis care in Europe. Hum Reprod. 2011 Nov;26(11):2988-99. doi: 10.1093/humrep/der277. Epub 2011 Sep 6. PMID: 21896549. | No information | Unknown | https://www.researchgate.net/publication/223566980_The_ENDOCARE_questionnaire_ECQ_A_valid_and_reliable_instrument_to_measure_the_patient-centeredness_of_endometriosis_care_in_Europe | None identified in March 2025 | None identified in March 2025 | |
| Reproductive and maternal | Endometriosis | Endometriosis Health Profile | EHP | UK | 2001 | To measure the impact of endometriosis on health related quality of life in women. | 30 | 5 | Pain; Control and powerlessness; Emotional well-being; Social support; Self-image In addition to the five scales, there are six modular parts covering: sexual intercourse, work, relationship with children, feelings about the medical profession, treatment, and infertility. |
Yes | Jones G, Kennedy S, Barnard A, Wong J, Jenkinson C. Development of an endometriosis quality-of-life instrument: The Endometriosis Health Profile-30. Obstetrics & Gynecology. 2001 Aug 1;98(2):258-64. Jones G, Jenkinson C, Kennedy S. Development of the short form endometriosis health profile questionnaire: the EHP-5. Quality of Life Research. 2004 Apr;13:695-704. |
Yes | Unknown | https://innovation.ox.ac.uk/outcome-measures/endometriosis-health-profi… | Nil | Yes | Bourdel N, Chauvet P, Billone V, Douridas G, Fauconnier A, Gerbaud L, Canis M. Systematic review of quality of life measures in patients with endometriosis. PloS one. 2019 Jan 10;14(1):e0208464. |
| Reproductive and maternal | Endometriosis | Endometriosis Impact Questionnaire | EIQ | Australia | 2019 | To measure the long-term impact of endometriosis on different aspects of women's lives. | 63 | 6 | Physical-psychosocial; Fertility; Sexual; Employment; Educational; Lifestyle | Yes | Moradi M, Parker M, Sneddon A, Lopez V, Ellwood D. The Endometriosis Impact Questionnaire (EIQ): a tool to measure the long-term impact of endometriosis on different aspects of women's lives. BMC Womens Health. 2019 May 14;19(1):64 ( | Yes | Unknown | Maryum Moradi, maryam.moradi.fu@gmail.com | Nil | Yes | Nicolas-Boluda A, Oppenheimer A, Bouaziz J, Fauconnier A. Patient-reported outcome measures in endometriosis. Journal of Clinical Medicine. 2021 Oct 30;10(21):5106. |
| Reproductive and maternal | Endometriosis | Endometriosis Pain and Bleeding Diary | EPBD | USA | 2010 | To assess treatment-related changes in endometriosis symptoms through a daily electronic diary. | 17 | No specific domains/dimensions identified | Yes | Deal LS, DiBenedetti DB, Williams VS, Fehnel SE. The development and validation of the daily electronic Endometriosis Pain and Bleeding Diary. Health Qual Life Outcomes. 2010 Jul 2;8:64 | Yes | Unknown | https://coas.iqvia.com/COAs/a037S000002rG8TQAU/endometriosis-pain-and-bleeding-diary-epbd | Nil | None identified in March 2025 | None identified in March 2025 | |
| Reproductive and maternal | Endometriosis | Endometriosis Treatment Satisfaction Questionnaire | ETSQ | USA | 2010 | To measure of patients' level of satisfaction with their endometriosis treatment. | 6 | No specific domains/dimensions identified | Yes | Deal LS, Williams VS, DiBenedetti DB, Fehnel SE. Development and psychometric evaluation of the Endometriosis Treatment Satisfaction Questionnaire. Quality of Life Research. 2010 Aug;19:899-905. | Yes | Unknown | https://coas.iqvia.com/COAs/a037S000002rG8UQAU/endometriosis-treatment-… https://coas.iqvia.com/coa?recordId=a037S000002rG8UQAU |
Nil | None identified in March 2025 | None identified in March 2025 | |
| Reproductive and maternal | Genetic Counselling | Genetic Counselling Outcomes Scale | GCOS | UK | 2011 | To develop an outcome measure for clinical genetic services, specifically focusing on an experience of empowerment among patients. | 24 | 2 | Cognitive control; Emotional control | Yes | McAllister M, Wood AM, Dunn G, Shiloh S, Todd C. The Genetic Counseling Outcome Scale: a new patient‐reported outcome measure for clinical genetics services. Clinical genetics. 2011 May;79(5):413-24. Grant PE, Pampaka M, Payne K, Clarke A, McAllister M. Developing a short-form of the genetic counselling outcome scale: the genomics outcome scale. European journal of medical genetics. 2019 May 1;62(5):324-34. Yuen J, Lee SY, Courtney E, Lim J, Soh H, Li ST, Chen Y, McAllister M, Fenwick EK, Ngeow J. Evaluating empowerment in genetic counseling using patient‐reported outcomes. Clinical genetics. 2020 Feb;97(2):246-56. |
Yes | Unknown | Marion McAllister, mcallistermf@cardiff.ac.uk | https://onlinelibrary.wiley.com/doi/full/10.1111/j.1399-0004.2011.01636… | Yes | Pekonen A, Eloranta S, Stolt M, Virolainen P, Leino-Kilpi H. Measuring patient empowerment–A systematic review. Patient education and counseling. 2020 Apr 1;103(4):777-87. Barr PJ, Scholl I, Bravo P, Faber MJ, Elwyn G, McAllister M. Assessment of patient empowerment-a systematic review of measures. PloS one. 2015 May 13;10(5):e0126553. |
| Reproductive and maternal | Heavy menstrual bleeding | Adolescent Menstrual Bleeding Questionnaire | aMBQ | Canada | 2021 | To measure patient‐reported outcome for heavy menstrual bleeding in adolescents. | 21 | 3 | Heaviness; Pain; Quality of life | Yes | Pike M, Chopek A, Young NL, Usuba K, Belletrutti MJ, McLaughlin R, Van Eyk N, Bouchard A, Matteson K, Price VE. Quality of life in adolescents with heavy menstrual bleeding: Validation of the Adolescent Menstrual Bleeding Questionnaire (aMBQ). Research and Practice in Thrombosis and Haemostasis. 2021 Oct;5(7):e12615. | No information | Unknown | Meghan Pike, Department of Pediatrics/Division of Pediatric Hematology-Oncology, IWK Health Centre, 5850/5980 University Avenue, PO Box 9700, Halifax, Nova Scotia, B3K 6R8, Canada; meghan.pike@dal.ca | Nil | None identified in March 2025 | None identified in March 2025 |
| Reproductive and maternal | Heavy menstrual bleeding | Menorrhagia Impact Questionnaire | MIQ | USA | 2010 | To measure the effect of menstrual blood loss on various aspects of quality of life in women with heavy menstrual bleeding. | 6 | No specific domains/dimensions identified | Yes | Bushnell DM, Martin ML, Moore KA, Richter HE, Rubin A, Patrick DL. Menorrhagia Impact Questionnaire: assessing the influence of heavy menstrual bleeding on quality of life. Current medical research and opinion. 2010 Dec 1;26(12):2745-55. | Yes | Unknown | Copyright held by Ferring Pharmaceuticals | https://www.tandfonline.com/doi/full/10.1185/03007995.2010.532200?casa_… | Yes | Magnay JL, O’Brien S, Gerlinger C, Seitz C. A systematic review of methods to measure menstrual blood loss. BMC Women's Health. 2018 Dec;18:1-3. Mackenzie AC, Chung S, Hoppes E, Mickler AK, Cartwright AF. Measurement of changes to the menstrual cycle: A transdisciplinary systematic review evaluating measure quality and utility for clinical trials. Plos one. 2024 Jul 25;19(7):e0306491. |
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| Reproductive and maternal | Heavy menstrual bleeding | Menorrhagia Outcomes Questionnaire | MOQ | UK | 1998 | To assess the outcomes of surgical treatment for menorrhagia due to benign disease. | 26 | 4 | Symptoms; Post-operative complications; Quality of life; Satisfaction with treatment | Yes | Lamping DL, Rowe P, Clarke A, Black N, Lessof L. Development and validation of the menorrhagia outcomes questionnaire. BJOG: An International Journal of Obstetrics & Gynaecology. 1998 Jul;105(7):766-79. | No copYesright or publiclYes available | Unknown | Dr D. L. Lamping, Health Services ResearchUnit, London School of Hygiene and Tropical Medicine, KeppelStreet, London WClE 7HT, UK. | https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/j.1471-0528.1998… | Yes | Clark TJ, Khan KS, Foon R, Pattison H, Bryan S, Gupta JK. Quality of life instruments in studies of menorrhagia: a systematic review. European Journal of Obstetrics & Gynecology and Reproductive Biology. 2002 Sep 10;104(2):96-104. |
| Reproductive and maternal | Heavy menstrual bleeding | Menorrhagia Questionnaire | MQ | Scotland | 1995 | To estimate the effect of menorrhagia on patients' perceived health status. | 15 | No specific domains/dimensions identified | Yes | Ruta DA, Garratt AM, Chadha YC, Flett GM, Hall MH, Russell IT. Assessment of patients with menorrhagia: how valid is a structured clinical history as a measure of health status?. Quality of Life Research. 1995 Feb;4:33-40. | No information | Unknown | https://link.springer.com/article/10.1007/BF00434381 | None identified in March 2025 | None identified in March 2025 | ||
| Reproductive and maternal | Heavy menstrual bleeding | Menstrual Bleeding Questionnaire | MBQ | USA | 2015 | To measure bleeding-related quality of life in women with heavy menstrual bleeding. | 20 | 3 | Heaviness; Pain; Quality of life | Yes | Matteson KA, Scott DM, Raker CA, Clark MA. The menstrual bleeding questionnaire: development and validation of a comprehensive patient-reported outcome instrument for heavy menstrual bleeding. BJOG 2015; 122: 681–689. | No information | Unknown | KA Matteson, Women & Infants Hospital, 101 Dudley Street, Providence, RI 02905, USA. Email: KMatteson@wihri.org | https://obgyn.onlinelibrary.wiley.com/action/downloadSupplement?doi=10.1111%2F1471-0528.13273&file=bjo13273-sup-0001-AppendixS1.pdf | None identified in March 2025 | None identified in March 2025 |
| Reproductive and maternal | Menopause | Day-to-Day Impact of Vaginal Aging | DIVA | USA | 2015 | To measure the impact of vaginal dryness, soreness, itching, irritation, and pain on functioning and wellbeing in postmenopausal women. | 23 | 4 | Activities of daily living; Emotional wellbeing; Sexual functioning; Self-concept and body image | Yes | Huang AJ, Gregorich SE, Kuppermann M, Nakagawa S, Van Den Eeden SK, Brown JS, Richter HE, Walter LC, Thom D, Stewart AL. Day-to-Day Impact of Vaginal Aging questionnaire: a multidimensional measure of the impact of vaginal symptoms on functioning and well-being in postmenopausal women. Menopause. 2015 Feb;22(2):144-54 | Yes | Unknown | https://www.sciencedirect.com/science/article/pii/S0378512218307722?cas… | Yes | Gabes M, Knuettel H, Stute P, Apfelbacher CJ. Measurement properties of patient-reported outcome measures (PROMs) for women with genitourinary syndrome of menopause: a systematic review. Menopause. 2019 Nov 1;26(11):1342-53. | |
| Reproductive and maternal | Menopause | Greene Climacteric Scale | GCS | UK | 1998 | To assess symptoms of women experiencing menopause (climacterium). | 21 | 3 | Psychological (anxiety and depression); Somatic symptoms; Vasomotor symptoms | Yes | Greene JG. Constructing a standard climacteric scale. Maturitas. 1998/2008 Sep 1;61(1-2):78-84. | Yes | Unknown | J.G. Greene, Medical Centre, Neilston, Glasgow, G78 3HJ, UK | https://rehab-base.ru/wp-content/uploads/2024/11/greene1998.pdf | Yes | Sourouni M, Zangger M, Honermann L, Foth D, Stute P. Assessment of the climacteric syndrome: a narrative review. Archives of gynecology and obstetrics. 2021 Oct;304:855-62. |
| Reproductive and maternal | Menopause | Menopause Rating Scale | MRS | German | 1994 | To measure symptoms/complaints among women experiencing menopause and changes pre- and post menopause replacement therapy. | 11 | 3 | Psychological; Somatic; Urogenital | Yes | Heinemann K, Ruebig A, Potthoff P, Schneider HP, Strelow F, Heinemann LA, Do MT. The Menopause Rating Scale (MRS) scale: a methodological review. Health Qual Life Outcomes. 2004 Sep 2;2:45. Schneider HP, Heinemann LA, Thiele K. The Menopause Rating Scale (MRS): cultural and linguistic translation into English. Life and Medical Science Online. 2002, 3. |
Yes | Unknown | Klaas Heinemann, Center for Epidemiology & Health Research Berlin, Invalidenstr. 115, 10115, Berlin, Germany; klaas@zeg-berlin.de | Nil | Yes | Shin H, Shin HS. Measurement of quality of life in menopausal women: a systematic review. Western journal of nursing research. 2012 Jun;34(4):475-503. Sourouni M, Zangger M, Honermann L, Foth D, Stute P. Assessment of the climacteric syndrome: a narrative review. Archives of gynecology and obstetrics. 2021 Oct;304:855-62. |
| Reproductive and maternal | Menopause | Menopause-Specific Quality of Life | MENQOL | Canada | 1996 | To measure condition-specific quality of life in women experiencing menopause. | 30 | 4 | Physical; Psychosocial; Sexual; Global quality of life | Yes | Hilditch JR, Lewis J, Peter A, van Maris B, Ross A, Franssen E, Guyatt GH, Norton PG, Dunn E. A menopause-specific quality of life questionnaire: development and psychometric properties. Maturitas. 1996 Jul;24(3):161-75 | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/menopause-specific-quality-of-life-questionnaire | Nil | Yes | Shin H, Shin HS. Measurement of quality of life in menopausal women: a systematic review. Western journal of nursing research. 2012 Jun;34(4):475-503. Sourouni M, Zangger M, Honermann L, Foth D, Stute P. Assessment of the climacteric syndrome: a narrative review. Archives of gynecology and obstetrics. 2021 Oct;304:855-62. |
| Reproductive and maternal | Menopause | UroGenital Atrophy Quality of Life | UGAQoL | UK | 1999 | To measure urogenital atrophy in post-menopausal women. | 20 | No specific domains/dimensions identified | Yes | McKenna SP, Whalley D, Renck-Hooper U, Carlin S, Doward LC. The development of a quality of life instrument for use with post-menopausal women with urogenital atrophy in the UK and Sweden. Qual Life Res. 1999 Aug;8(5):393-8 | Yes | Unknown | https://www.galen-research.com/measures-database/ | Nil | Yes | Gabes M, Knuettel H, Stute P, Apfelbacher CJ. Measurement properties of patient-reported outcome measures (PROMs) for women with genitourinary syndrome of menopause: a systematic review. Menopause. 2019 Nov 1;26(11):1342-53. | |
| Reproductive and maternal | Mothers, birth | Birth Satisfaction Scale-Revised | BSS-R | UK | 2011 | To assess women's perceptions of the birth experience. | 10 | 3 | Quality of care provision; Women's personal attributes; Stress experienced during labour | Yes | Hollins Martin C, Fleming V. The birth satisfaction scale. International journal of health care quality assurance. 2011 Feb 8;24(2):124-35. Martin CJ, Martin CR. Development and psychometric properties of the Birth Satisfaction Scale-Revised (BSS-R). Midwifery. 2014 Jun 1;30(6):610-9. Martin CR, Hollins Martin C, Redshaw M. The birth satisfaction scale-revised Indicator (BSS-RI). BMC pregnancy and childbirth. 2017 Dec;17:1-9. Jefford E, Hollins Martin CJ, Martin CR. Development and validation of the Australian version of the Birth Satisfaction Scale-Revised (BSS-R). Journal of reproductive and infant psychology. 2018 Jan 1;36(1):42-58. |
Yes | Unknown | https://www.bss-r.co.uk/language-specific-bss-r/ | Nil | Yes | Nilvér H, Begley C, Berg M. Measuring women’s childbirth experiences: a systematic review for identification and analysis of validated instruments. BMC pregnancy and childbirth. 2017 Dec;17:1-9. Blazquez RA, Corchon S, Ferrandiz EF. Validity of instruments for measuring the satisfaction of a woman and her partner with care received during labour and childbirth: Systematic review. Midwifery. 2017 Dec 1;55:103-12. |
| Reproductive and maternal | Obstetric recovery | Obstetric Quality of Recovery survey | ObsQoR-10 | UK | 2019 | To measure patient-reported quality of early recovery following spontaneous or operative vaginal delivery. | 10 | No specific domains/dimensions identified | Yes | Ciechanowicz S, Setty T, Robson E, Sathasivam C, Chazapis M, Dick J, Carvalho B, Sultan P. Development and evaluation of an obstetric quality-of-recovery score (ObsQoR-11) after elective Caesarean delivery. British journal of anaesthesia. 2019 Jan 1;122(1):69-78. Sultan P, Kormendy F, Nishimura S, Carvalho B, Guo N, Papageorgiou C. Comparison of spontaneous versus operative vaginal delivery using Obstetric Quality of Recovery-10 (ObsQoR-10): An observational cohort study. J Clin Anesth. 2020 Aug;63:109781. |
Yes | Unknown | Pervez Sultan, p.sultan@icloud.com | Nil | Yes | O'Byrne LJ, Bodunde EO, Maher GM, Khashan AS, Greene RM, Browne JP, McCarthy FP. Patient-reported outcome measures evaluating postpartum maternal health and well-being: a systematic review and evaluation of measurement properties. American Journal of Obstetrics & Gynecology MFM. 2022 Nov 1;4(6):100743. Sharawi N, Klima L, Shah R, Blake L, Carvalho B, Sultan P. Evaluation of patient‐reported outcome measures of functional recovery following caesarean section: a systematic review using the consensus‐based standards for the selection of health measurement instruments (COSMIN) checklist. Anaesthesia. 2019 Nov;74(11):1439-55. |
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| Reproductive and maternal | Pelvic floor disorders | Pelvic Floor Distress Inventory | PFDI | USA | 2001 | To assess symptom distress in women with pelvic floor disorders. | 46 | 3 scales, some with multiple subscales | Urinary Distress Inventory; Colorectal-anal Distress Inventory; Pelvic Organ Prolapse Distress Inventory | Yes | Barber MD, Kuchibhatla MN, Pieper CF, Bump RC. Psychometric evaluation of 2 comprehensive condition-specific quality of life instruments for women with pelvic floor disorders. American journal of obstetrics and gynecology. 2001 Dec 1;185(6):1388-95. Barber M, Walters MD, Bump RC. Short forms of two condition-specific quality-of-life questionnaires for women with pelvic floor disorders (PFDI-20 and PFIQ-7). American journal of obstetrics and gynecology. 2005 Jul 1;193(1):103-13. Barber MD, Chen Z, Lukacz E, Markland A, Wai C, Brubaker L, Nygaard I, Weidner A, Janz NK, Spino C. Further validation of the short form versions of the Pelvic Floor Distress Inventory (PFDI) and Pelvic Floor Impact Questionnaire (PFIQ). Neurourology and urodynamics. 2011 Apr;30(4):541-6. de Arruda GT, dos Santos Henrique T, Virtuoso JF. Pelvic floor distress inventory (PFDI)—systematic review of measurement properties. International Urogynecology Journal. 2021 Oct;32:2657-69. |
No information | Unknown | https://www.sralab.org/sites/default/files/2017-06/WUC_Pelvic_Floor_Questionnaire.pdf | Yes | Gard E, Lyman A, Garg H. Perinatal incontinence assessment tools: a psychometric evaluation and scoping review. Journal of Women's Health. 2022 Aug 1;31(8):1208-18. Zuchelo LT, Bezerra IM, Da Silva AT, Gomes JM, Soares Junior JM, Chada Baracat E, de Abreu LC, Sorpreso IC. Questionnaires to evaluate pelvic floor dysfunction in the postpartum period: a systematic review. International Journal of Women's Health. 2018 Aug 8:409-24. Ralphsmith M, Ahern S, Dean J, Ruseckaite R. Patient-reported outcome measures for pain in women with pelvic floor disorders: a systematic review. International Urogynecology Journal. 2022 Sep;33(9):2325-34. |
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| Reproductive and maternal | Pelvic floor disorders | Pelvic Floor Impact Questionnaire | PFIQ | USA | 2001 | To measure the impact of pelvic floor symptoms on quality of life in women. | 93 | 3 scales, some with multiple subscales | Incontinence Impact Questionnaire; Colorectal-anal Impact Questionnaire; Pelvic Organ Prolapse Impact Questionnaire | Yes | Barber MD, Kuchibhatla MN, Pieper CF, Bump RC. Psychometric evaluation of 2 comprehensive condition-specific quality of life instruments for women with pelvic floor disorders. American journal of obstetrics and gynecology. 2001 Dec 1;185(6):1388-95. Barber M, Walters MD, Bump RC. Short forms of two condition-specific quality-of-life questionnaires for women with pelvic floor disorders (PFDI-20 and PFIQ-7). American journal of obstetrics and gynecology. 2005 Jul 1;193(1):103-13. Barber MD, Chen Z, Lukacz E, Markland A, Wai C, Brubaker L, Nygaard I, Weidner A, Janz NK, Spino C. Further validation of the short form versions of the Pelvic Floor Distress Inventory (PFDI) and Pelvic Floor Impact Questionnaire (PFIQ). Neurourology and urodynamics. 2011 Apr;30(4):541-6. |
No information | Unknown | Matthew D. Barber, MD, MHS, 9500 Euclid Ave, A81, Cleveland Clinic Foundation, Cleveland, OH 44145. | Nil | Yes | Gard E, Lyman A, Garg H. Perinatal incontinence assessment tools: a psychometric evaluation and scoping review. Journal of Women's Health. 2022 Aug 1;31(8):1208-18. Zuchelo LT, Bezerra IM, Da Silva AT, Gomes JM, Soares Junior JM, Chada Baracat E, de Abreu LC, Sorpreso IC. Questionnaires to evaluate pelvic floor dysfunction in the postpartum period: a systematic review. International Journal of Women's Health. 2018 Aug 8:409-24. |
| Reproductive and maternal | Pelvic floor disorders | Pelvic Organ Prolapse/Urinary Incontinence Sexual Function Questionnaire - IUGA Revised | PISQ-IR | UK; USA | 2013 | To assess sexual function in women with pelvic disorders who are either sexually active or inactive. | 33 | 6 | Arousal, orgasm; Partner-related issues; Condition-specific issues of sexual response; Global quality; Sexual desire; Condition-specific issues of quality, satisfaction, and desire | Yes | Rogers RG, Rockwood TH, Constantine ML, Thakar R, Kammerer-Doak DN, Pauls RN, Parekh M, Ridgeway B, Jha S, Pitkin J, Reid F, Sutherland SE, Lukacz ES, Domoney C, Sand P, Davila GW, Espuna Pons ME. A new measure of sexual function in women with pelvic floor disorders (PFD): the Pelvic Organ Prolapse/Incontinence Sexual Questionnaire, IUGA-Revised (PISQ-IR). Int Urogynecol J. 2013 Jul;24(7):1091-103 | No information | Unknown | survey@iuga.org | https://static-content.springer.com/esm/art%3A10.1007%2Fs00192-012-2020-8/MediaObjects/192_2012_2020_MOESM1_ESM.pdf | Yes | Dieter AA, Halder GE, Pennycuff JF, Singh R, El-Nashar SA, Lipetskaia L, Orejuela FJ, Jeppson PC, Sleemi A, Raman SV, Balk EM. Patient-reported outcome measures for use in women with pelvic organ prolapse: a systematic review. Obstetrics & Gynecology. 2023 Jun 1;141(6):1098-114. Ralphsmith M, Ahern S, Dean J, Ruseckaite R. Patient-reported outcome measures for pain in women with pelvic floor disorders: a systematic review. International Urogynecology Journal. 2022 Sep;33(9):2325-34. |
| Reproductive and maternal | Pelvic floor disorders | Satisfaction with Decision Scale for Pelvic Floor Disorders | SDS-PFD | USA | 2008 | To measure women's satisfaction with decisions regarding surgical therapy for pelvic floor disorders. | 6 | No specific domains/dimensions identified | Yes | Sung VW, Kauffman N, Raker CA, Myers DL, Clark MA. Validation of decision-making outcomes for female pelvic floor disorders. American journal of obstetrics and gynecology. 2008 May 1;198(5):575-e1. | No information | Unknown | Vivian Sung, Division of Urogynecology and Reconstructive Pelvic Surgery, Department of Obstetrics and Gynecology, Warren Alpert Medical School, Brown University, Providence, RI | https://www.sciencedirect.com/science/article/pii/S0002937808000021#app1 | None identified in March 2025 | None identified in March 2025 | |
| Reproductive and maternal | Pelvic organ prolapse | Body Image In Pelvic Organ Prolapse | BIPOP | USA | 2014 | To assess how prolapse affects a woman's body image. | 10 | 2 | General attractiveness; Prolapse related reaction to partners | Yes | Lowder JL, Ghetti C, Oliphant SS, Skoczylas LC, Swift S, Switzer GE. Body image in the pelvic organ prolapse questionnaire: development and validation. American journal of obstetrics and gynecology. 2014 Aug 1;211(2):174-e1. | No copYesright or publiclYes available | Unknown | Jerry L. Lowder, Division of Female Pelvic Medicine and Reconstructive Surgery, Department of Obstetrics and Gynecology and Reproductive Sciences, Magee-Womens Hospital, University of Pittsburgh School of Medicine, Pittsburgh, PA | Nil | Yes | Dieter AA, Halder GE, Pennycuff JF, Singh R, El-Nashar SA, Lipetskaia L, Orejuela FJ, Jeppson PC, Sleemi A, Raman SV, Balk EM. Patient-reported outcome measures for use in women with pelvic organ prolapse: a systematic review. Obstetrics & Gynecology. 2023 Jun 1;141(6):1098-114. |
| Reproductive and maternal | Pelvic organ prolapse | Electronic Personal Assessment Questionnaire For Women With Pelvic Floor Disorders | EPAQ-PF | UK | 2006 | To assess self-reported symptoms and quality of life in women with pelvic floor disorders. | 115 | 4 | Urinary; Bowel; Vaginal; Sexual | Yes | Radley SC, Jones GL, Tanguy EA, Stevens VG, Nelson C, Mathers NJ. Computer interviewing in urogynaecology: concept, development and psychometric testing of an electronic pelvic floor assessment questionnaire in primary and secondary care. BJOG: An International Journal of Obstetrics & Gynaecology. 2006 Feb;113(2):231-8. | No information | Unknown | http://www.epaq.co.uk/Home/GandO | Nil | Yes | Zuchelo LT, Bezerra IM, Da Silva AT, Gomes JM, Soares Junior JM, Chada Baracat E, de Abreu LC, Sorpreso IC. Questionnaires to evaluate pelvic floor dysfunction in the postpartum period: a systematic review. International Journal of Women's Health. 2018 Aug 8:409-24. Ralphsmith M, Ahern S, Dean J, Ruseckaite R. Patient-reported outcome measures for pain in women with pelvic floor disorders: a systematic review. International Urogynecology Journal. 2022 Sep;33(9):2325-34. |
| Reproductive and maternal | Pelvic organ prolapse | Genital Self-Image Scale | GSIS | USA | 2012 | To assess genital self-image. | 20 | 4 | Confidence; Appeal; Function; Comfort | Yes | Zielinski RE, Kane-Low L, Miller JM, Sampselle C. Validity and reliability of a scale to measure genital body image. Journal of sex & marital therapy. 2012 Jul 1;38(4):309-24 Berman LA, Berman J, Miles M, Pollets DA, Powell JA. Genital self-image as a component of sexual health: Relationship between genital self-image, female sexual function, and quality of life measures. Journal of Sex & Marital Therapy. 2003 Jan 1;29(sup1):11-21. |
No information | Unknown | https://www.tandfonline.com/doi/full/10.1080/0092623X.2011.569639?casa_… | Yes | Gray TG, Sneyd R, Scurr K, Jones GL, Iles D, Jha S, Radley SC. Patient-reported outcome measures which assess body image in urogynaecology patients: a systematic review. International urogynecology journal. 2019 May 1;30:673-81. | |
| Reproductive and maternal | Pelvic organ prolapse | International Consultation On Incontinence Modular Questionnaire-Vaginal Symptoms | ICIQ-VS | UK | 2006 | To measure the severity and impact of vaginal symptoms and related sexual matters. | 14 | 3 | Vaginal symptoms; Sexual matters; Quality of life | Yes | Price N, Jackson SR, Avery K, Brookes ST, Abrams P. Development and psychometric evaluation of the ICIQ Vaginal Symptoms Questionnaire: the ICIQ‐VS. BJOG: An International Journal of Obstetrics & Gynaecology. 2006 Jun;113(6):700-12. | Yes | Unknown | https://iciq.net/iciq-vs | https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/j.1471-0528.2006… | Yes | Zuchelo LT, Bezerra IM, Da Silva AT, Gomes JM, Soares Junior JM, Chada Baracat E, de Abreu LC, Sorpreso IC. Questionnaires to evaluate pelvic floor dysfunction in the postpartum period: a systematic review. International Journal of Women's Health. 2018 Aug 8:409-24. |
| Reproductive and maternal | Pelvic organ prolapse | Pelvic Organ Prolapse/Urinary Incontinence Sexual Questionnaire | PISQ | USA | 2001 | To evaluate sexual functioning in women with urinary incontinence or pelvic organ prolapse. | 31 | 3 | Behavioural/emotive; Physical; Partner-related | Yes | Rogers RG, Kammerer-Doak D, Villarreal A, Coates K, Qualls C. A new instrument to measure sexual function in women with urinary incontinence or pelvic organ prolapse. American journal of obstetrics and gynecology. 2001 Mar 1;184(4):552-8. Rogers RG, Coates KW, Kammerer-Doak D, Khalsa S, Qualls C. A short form of the pelvic organ prolapse/urinary incontinence sexual questionnaire (PISQ-12). International Urogynecology Journal. 2003 Aug;14:164-8. Rogers RG, Rockwood TH, Constantine ML, Thakar R, Kammerer-Doak DN, Pauls RN, Parekh M, Ridgeway B, Jha S, Pitkin J, Reid F. A new measure of sexual function in women with pelvic floor disorders (PFD): the Pelvic Organ Prolapse/Incontinence Sexual Questionnaire, IUGA-Revised (PISQ-IR). International urogynecology journal. 2013 Jul;24:1091-103. |
No information | Unknown | https://www.iuga.org/resources/pisq-ir | https://www.sciencedirect.com/science/article/pii/S0002937801546670?cas… | Yes | Ralphsmith M, Ahern S, Dean J, Ruseckaite R. Patient-reported outcome measures for pain in women with pelvic floor disorders: a systematic review. International Urogynecology Journal. 2022 Sep;33(9):2325-34. Oppenheimer A, Boitrelle F, Nicolas‐Boluda A, Fauconnier A. Measurement properties of sexual function assessment questionnaires in women with endometriosis: A systematic review following COSMIN guidelines. Acta Obstetricia et Gynecologica Scandinavica. 2024 May;103(5):799-823. Sharawi N, Klima L, Shah R, Blake L, Carvalho B, Sultan P. Evaluation of patient‐reported outcome measures of functional recovery following caesarean section: a systematic review using the consensus‐based standards for the selection of health measurement instruments (COSMIN) checklist. Anaesthesia. 2019 Nov;74(11):1439-55. |
| Reproductive and maternal | Pelvic organ prolapse | Prolapse Quality Of Life | P-QoL | UK | 2005 | To assess the severity of symptoms and their impact on the quality of life in women with urogenital prolapse. | 20 | 9 | General health perceptions; Prolapse impact; Role limitations; Physical limitations; Social limitations; Personal relationships; Emotions; Sleep/energy; Severity measures | Yes | Digesu GA, Khullar V, Cardozo L, Robinson D, Salvatore S. P-QOL: a validated questionnaire to assess the symptoms and quality of life of women with urogenital prolapse. International Urogynecology Journal. 2005 Jun;16:176-81. | Yes | Unknown | The International Urogynecology Journal | https://link.springer.com/article/10.1007/s00192-004-1225-x | Yes | Belayneh T, Gebeyehu A, Adefris M, Rortveit G. A systematic review of the psychometric properties of the cross-cultural adaptations and translations of the Prolapse Quality of Life (P-QoL) questionnaire. International urogynecology journal. 2019 Dec;30:1989-2000. Dieter AA, Halder GE, Pennycuff JF, Singh R, El-Nashar SA, Lipetskaia L, Orejuela FJ, Jeppson PC, Sleemi A, Raman SV, Balk EM. Patient-reported outcome measures for use in women with pelvic organ prolapse: a systematic review. Obstetrics & Gynecology. 2023 Jun 1;141(6):1098-114. Gray TG, Vickers H, Krishnaswamy P, Jha S. A systematic review of English language patient-reported outcome measures for use in urogynaecology and female pelvic medicine. International Urogynecology Journal. 2021 Aug;32(8):2033-92. |
| Reproductive and maternal | Perinatal depression | Antenatal Risk Questionnaire-Revised | ANRQ-R | Australia | 2013 | To measure risk factors for postnatal depression in pregnant women. | 11 | 10 | Woman's past history of depression or other mental health condition and its impact on socio-occupational function; Quality of her partner relationship; Level of social support; Level of distress associated with recent stressful life events; Tendency towards worry and perfectionism; Adverse childhood experiences (emotional, physical or sexual abuse); Quality of emotional relationship with her own mother while she was growing up; Current or recent experience of partner violence and problematic substance use | Yes | Reilly N, Loxton D, Black E, Austin MP. The Antenatal Risk Questionnaire-Revised: Development, use and test-retest reliability in a community sample of pregnant women in Australia. Journal of affective disorders. 2021 Oct 1;293:43-50. Austin MP, Colton J, Priest S, Reilly N, Hadzi-Pavlovic D. The antenatal risk questionnaire (ANRQ): acceptability and use for psychosocial risk assessment in the maternity setting. Women and Birth. 2013 Mar 1;26(1):17-25. |
PubliclYes available | Unknown | https://www.cope.org.au/health-professionals/health-professionals-3/identifying-risk/ | None identified in March 2025 | None identified in March 2025 | |
| Reproductive and maternal | Polycystic ovary syndrome | Polycystic Ovary Syndrome Questionnaire | PCOSQ | Canada | 1998 | To measure health-related quality of life in women with polycystic ovarian syndrome. | 26 | 5 | Emotions; Body hair; Weight; Infertility; Menstrual problems | Yes | Cronin L, Guyatt G, Griffith L, Wong E, Azziz R, Futterweit W, Cook D, Dunaif A. Development of a health-related quality-of-life questionnaire (PCOSQ) for women with polycystic ovary syndrome (PCOS). The Journal of Clinical Endocrinology & Metabolism. 1998 Jun 1;83(6):1976-87. Guyatt G, Weaver B, Cronin L, Dooley JA, Azziz R. Health-related quality of life in women with polycystic ovary syndrome, a self-administered questionnaire, was validated. Journal of clinical epidemiology. 2004 Dec 1;57(12):1279-87. |
Yes | Unknown | https://research.mcmaster.ca/industry-investors/technologies-available-for-licensing/request-for-license/ | Nil | Yes | Malik‐Aslam A, Reaney MD, Speight J. The Suitability of Polycystic Ovary Syndrome‐Specific Questionnaires for Measuring the Impact of PCOS on Quality of Life in Clinical Trials. Value in health. 2010 Jun;13(4):440-6. Behboodi Moghadam Z, Fereidooni B, Saffari M, Montazeri A. Measures of health-related quality of life in PCOS women: a systematic review. International journal of women's health. 2018 Aug 1:397-408. |
| Reproductive and maternal | Postnatal | Mother Object Relations Scale-Short Form | MORS-SF | Hungary; UK | 2019 | To assess mothers' representations of their infants' feelings towards them. | 14 | 2 | Invasion; Warmth | Yes | Oates J, Gervai J: Mothers’ perceptions of their infants. J Prenat Perinat Psychol Health. 2019;33(4):282–300. | Yes | Unknown | https://www.morscales.org/ | Nil | Yes | Wittkowski A, Vatter S, Muhinyi A, Garrett C, Henderson M. Measuring bonding or attachment in the parent-infant-relationship: A systematic review of parent-report assessment measures, their psychometric properties and clinical utility. Clinical Psychology Review. 2020 Dec 1;82:101906. |
| Reproductive and maternal | Postnatal | Mother-Generated Index | MGI | Scotland | 2002 | To assess postnatal quality of life. | 8 | 8 | Dimensions are self-selected via taingle sheet, three-step questionnaire. Step 1: List up to eight areas in life affected by having a child, Step 2: Give score out of 10 for each area, Step 3: Allocate 30 "spending points" across the areas | Yes | Symon A, MacDonald A, Ruta D. Postnatal quality of life assessment: introducing the Mother‐Generated Index. Birth. 2002 Mar;29(1):40-6. | Yes | Unknown | Copyright held by the University of Dundee | Nil | Yes | Mogos MF, August EM, Salinas-Miranda AA, Sultan DH, Salihu HM. A systematic review of quality of life measures in pregnant and postpartum mothers. Applied research in quality of life. 2013 Jun;8:219-50. Brekke M, Berg RC, Amro A, Glavin K, Haugland T. Quality of Life instruments and their psychometric properties for use in parents during pregnancy and the postpartum period: a systematic scoping review. Health and Quality of Life Outcomes. 2022 Jul 9;20(1):107. |
| Reproductive and maternal | Postnatal | Mother-To-Infant Bonding Scale | MIBS | UK | 2005 | To assess the feelings of a mother towards her new baby. | 8 | No specific domains/dimensions identified | Yes | Taylor A, Atkins R, Kumar R, Adams D, Glover V. A new Mother-to-Infant Bonding Scale: links with early maternal mood. Archives of women’s mental health. 2005 May;8:45-51. | No information | Unknown | Alyx Taylor, alyx.taylor@tvu.ac.uk | https://link.springer.com/article/10.1007/s00737-005-0074-z | Yes | Wittkowski A, Vatter S, Muhinyi A, Garrett C, Henderson M. Measuring bonding or attachment in the parent-infant-relationship: A systematic review of parent-report assessment measures, their psychometric properties and clinical utility. Clinical Psychology Review. 2020 Dec 1;82:101906. O'Byrne LJ, Bodunde EO, Maher GM, Khashan AS, Greene RM, Browne JP, McCarthy FP. Patient-reported outcome measures evaluating postpartum maternal health and well-being: a systematic review and evaluation of measurement properties. American Journal of Obstetrics & Gynecology MFM. 2022 Nov 1;4(6):100743. |
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| Reproductive and maternal | Postpartum | Mothers' Concern Questionnaire | MoCQ | Israel | 2007 | To identify primary concerns of mothers in the first post-partum year. | 27 | 6 | Family health; Return to work; Mother's wellbeing; Relationship/support; Infant care; Spouse | Yes | Kaitz M. Maternal concerns during early parenthood. Child: care, health and development. 2007 Nov;33(6):720-7. | No information | Unknown | Marsha Kaitz, Department of Psychology, Hebrew University, Jerusalem 91905, Israel E-mail: msmarsha@mscc.huji.ac.il |
Nil | None identified in March 2025 | None identified in March 2025 |
| Reproductive and maternal | Postpartum | Postpartum Specific Anxiety Scale | PSAS | UK | 2016 | To measure the anxieties faced by postpartum women. | 51 | 4 | Competence and attachment anxieties; Safety and welfare anxieties; Practical baby care anxieties; Psychosocial adjustment to motherhood | Yes | Fallon V, Halford JC, Bennett KM, Harrold JA. The postpartum specific anxiety scale: development and preliminary validation. Archives of women's mental health. 2016 Dec;19:1079-90. Silverio SA, Davies SM, Christiansen P, Aparicio-García ME, Bramante A, Chen P, Costas-Ramón N, de Weerth C, Della Vedova AM, Infante Gil L, Lustermans H, Wendland J, Xu J, Halford JCG, Harrold JA, Fallon V. A validation of the Postpartum Specific Anxiety Scale 12-item research short-form for use during global crises with five translations. BMC Pregnancy Childbirth. 2021 Feb 8;21(1):112 |
Yes | Unknown | https://psas.liverpool.ac.uk/#:~:text=In%20response%20to%20this%2C%20The%20Postpartum%20Specific%20Anxiety,anxieties%20experienced%20by%20women%20over%20the%20previous%20week. | Nil | Yes | O'Carroll J, Ando K, Yun R, Panelli D, Nicklin A, Kennedy N, Carvalho B, Blake L, Coker J, Kaysen D, Sultan P. A systematic review of patient–reported outcome measures used in maternal postpartum anxiety. American Journal of Obstetrics & Gynecology MFM. 2023 Sep 1;5(9):101076. |
| Reproductive and maternal | Postpartum mental health | Edinburgh Postnatal Depression Scale | EPDS | UK | 1987 | To identify women with symptoms of emotional distress during pregnancy and the postnatal period. This is not a diagnostic tool. | 10 | No specific domains/dimensions identified | Yes | Cox JL, Holden JM, Sagovsky R. Detection of postnatal depression: development of the 10-item Edinburgh Postnatal Depression Scale. The British journal of psychiatry. 1987 Jun;150(6):782-6. Cox JL, Chapman G, Murray D, Jones P. Validation of the Edinburgh Postnatal Depression Scale (EPDS) in non-postnatal women. Journal of affective disorders. 1996 Jul 29;39(3):185-9. |
Yes | Unknown | The Royal College of Psychiatrists | https://www.blackdoginstitute.org.au/wp-content/uploads/2020/04/edinbur… | Yes | Berg RC, Solberg BL, Glavin K, Olsvold N. Instruments to identify symptoms of paternal depression during pregnancy and the first postpartum year: a systematic scoping review. American Journal of Men's Health. 2022 Sep;16(5):15579883221114984. Sultan P, Ando K, Elkhateb R, George RB, Lim G, Carvalho B, Chitneni A, Kawai R, Tulipan T, Blake L, Coker J. Assessment of patient-reported outcome measures for maternal postpartum depression using the consensus-based standards for the selection of health measurement instruments guideline: a systematic review. JAMA Network Open. 2022 Jun 1;5(6):e2214885-. |
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| Reproductive and maternal | Premenstrual | PreMenstrual Symptoms Impact Survey™ | PMSIS | USA | 2008 | To evaluate the impact of premenstrual symptoms on health-related quality of life. | 6 | No specific domains/dimensions identified | Yes | Wallenstein GV, Blaisdell-Gross B, Gajria K, Guo A, Hagan M, Kornstein SG, Yonkers KA. Development and validation of the Premenstrual Symptoms Impact Survey (PMSIS): a disease-specific quality of life assessment tool. Journal of Women's Health. 2008 Apr 1;17(3):439-50. | Yes | Unknown | https://www.qualitymetric.com/health-surveys/premenstrual-symptoms-impact-survey-pmsis/#:~:text=The%20Premenstrual%20Symptoms%20Impact%20Survey%E2%84%A2%20is%20a%20valuable,symptoms%20have%20on%20health-related%20quality%20of%20life%20%28HRQoL%29. | Nil | None identified in March 2025 | None identified in March 2025 | |
| Reproductive and maternal | Premenstrual | Premenstrual Symptoms Screening Tool | PSST | Canada | 2003 | To identify women who suffer from severe premenstrual syndrome/premenstrual dysphoric disorder. | 19 | No specific domains/dimensions identified | Yes | Steiner M, Macdougall M, Brown E. The premenstrual symptoms screening tool (PSST) for clinicians. Archives of women’s mental health. 2003 Aug;6:203-9. Steiner M, Peer M, Palova E, Freeman EW, Macdougall M, Soares CN. The Premenstrual Symptoms Screening Tool revised for adolescents (PSST-A): prevalence of severe PMS and premenstrual dysphoric disorder in adolescents. Archives of women's mental health. 2011 Feb;14:77-81. Hariri FZ, Moghaddam-Banaem L, Siah Bazi S, Saki Malehi A, Montazeri A. The Iranian version of the Premenstrual Symptoms Screening Tool (PSST): a validation study. Archives of women's mental health. 2013 Dec;16:531-7. |
Yes | Unknown | https://research.mcmaster.ca/industry-investors/technologies-available-for-licensing/request-for-license/ | Nil | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Asthma | Asthma Control Questionnaire | ACQ | Canada; USA | 1999 | To assess the adequacy and change in asthma control, occurring either spontaneously or as a result of treatment over the preceding 7 days. | 7 | No specific domains/dimensions identified | Yes | Juniper EF, O'byrne PM, Guyatt GH, Ferrie PJ, King DR. Development and validation of a questionnaire to measure asthma control. European respiratory journal. 1999 Oct 1;14(4):902-7. Juniper EF, O'Byrne PM, Ferrie PJ, King DR, Roberts JN. Measuring asthma control: clinic questionnaire or daily diary?. American journal of respiratory and critical care medicine. 2000 Oct 1;162(4):1330-4. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/asthma-control-questionnair… https://eprovide.mapi-trust.org/instruments/asthma-control-questionnaire |
Nil | Yes | Bousema S, Bohnen AM, Bindels PJ, Elshout G. A systematic review of questionnaires measuring asthma control in children in a primary care population. NPJ Primary Care Respiratory Medicine. 2023 Jul 11;33(1):25. Worth A, Hammersley V, Knibb R, Flokstra-de-Blok B, DunnGalvin A, Walker S, Dubois AE, Sheikh A. Patient-reported outcome measures for asthma: a systematic review. NPJ primary care respiratory medicine. 2014 Jun 26;24(1):1-8. Isik E, Mack G, Sockrider MM, Fredland NM, Shegog R. Assessing Available Adolescent Self-Reported Measures for Asthma Management: A Systematic Literature Review. Pediatric Allergy, Immunology, and Pulmonology. 2023 Sep 1;36(3):69-89. |
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| Respiratory | Asthma | Asthma Control Test | ACT | USA | 2004 | To assess asthma control and identify patients with poor asthma control with a focus on the last 4 weeks. | 5 | No specific domains/dimensions identified | Yes | Nathan RA, Sorkness CA, Kosinski M, Schatz M, Li JT, Marcus P, Murray JJ, Pendergraft TB. Development of the asthma control test: a survey for assessing asthma control. Journal of Allergy and Clinical Immunology. 2004 Jan 1;113(1):59-65. Schatz M, Sorkness CA, Li JT, Marcus P, Murray JJ, Nathan RA, Kosinski M, Pendergraft TB, Jhingran P. Asthma Control Test: reliability, validity, and responsiveness in patients not previously followed by asthma specialists. Journal of Allergy and Clinical Immunology. 2006 Mar 1;117(3):549-56. |
Yes | Unknown | https://www.qualitymetric.com/health-surveys/asthma-control-test-act/#:~:text=The%20Asthma%20Control%20Test%20with%20Allergic%20Triggers%20%28ACT-AT%29,of%20known%20environmental%20triggers%20that%20exacerbate%20asthma%20symptoms. | Nil | Yes | Isik E, Mack G, Sockrider MM, Fredland NM, Shegog R. Assessing Available Adolescent Self-Reported Measures for Asthma Management: A Systematic Literature Review. Pediatric Allergy, Immunology, and Pulmonology. 2023 Sep 1;36(3):69-89. Worth A, Hammersley V, Knibb R, Flokstra-de-Blok B, DunnGalvin A, Walker S, Dubois AE, Sheikh A. Patient-reported outcome measures for asthma: a systematic review. NPJ primary care respiratory medicine. 2014 Jun 26;24(1):1-8. |
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| Respiratory | Asthma | Asthma Daytime Symptoms Diary | ADSD | USA | 2022 | To assess daily daytime asthma symptoms among adolescents and adults in clinical trials (completed at bedtime). | 6 | No specific domains/dimensions identified | Yes | Gater A, Nelsen L, Coon CD, Eremenco S, O’Quinn S, Khan AH, Eckert L, Staunton H, Bonner N, Hall R, Krishnan JA. Asthma daytime symptom diary (ADSD) and asthma nighttime symptom diary (ANSD): measurement properties of novel patient-reported symptom measures. The Journal of Allergy and Clinical Immunology: In Practice. 2022 May 1;10(5):1249-59. |
Yes | Unknown | https://www.c-pathcoas.org/ | Nil | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Asthma | Asthma Impact on Quality of Life Scale | A-IQOLS | USA | 2018 | To measure the negative effect of asthma on quality of life from the patient's perspective over the preceding 4-weeks. | 16 | No specific domains/dimensions identified | Yes | Wilson SR, Mulligan MJ, Ayala E, Chausow A, Huang Q, Knowles SB, Gummidipundi S, Castro M, Wise RA. A new measure to assess asthma's effect on quality of life from the patient's perspective. Journal of Allergy and Clinical Immunology. 2018 Mar 1;141(3):1085-95. Wilson SR, Wise RA, Castro M, Mulligan MJ, Ayala E, Chausow A, Huang Q, Gummidipundi S. Performance of the Asthma Impact on Quality of Life Scale (AIQOLS) in diverse asthma research populations and demographic sub-groups. J Allergy Clin Immunol. 2019 January ; 143(1): 395–402.e7 |
No copYesright or publiclYes available | Unknown | Sandra R. Wilson, PhD, Palo Alto Medical Foundation Research Institute, 795 El Camino Real, Palo Alto, CA 94301; wilsons@pamfri.org | https://www.sciencedirect.com/science/article/pii/S0091674917308874?casa_token=4CNlrHK9lDMAAAAA:nw6Xo0D9u8PiMU3bUUNYQlLCQy4HR2ckdQYvwMktYVLew4GrzSoG-rF4cpzPZj7lfu6hYyz7Rg | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Asthma | Asthma Impact Survey™ | AIS-6 | USA | 2007 | To provide a brief assessment of asthma-specific quality-of-life over the past 4 weeks. | 6 | No specific domains/dimensions identified | Yes | Schatz M, Mosen D, Kosinski M, Vollmer WM, O'Connor E, Cook EF, Zeiger RS. Validation of the asthma impact survey, a brief asthma-specific quality of life tool. Qual Life Res. 2007 Mar;16(2):345-55 Schatz M, Zeiger RS, Yang SJ, Chen W, Kosinski M. Further validation and definition of the psychometric properties of the Asthma Impact Survey. J Allergy Clin Immunol. 2011 Jul;128(1):44-49.e1 |
Yes | Unknown | https://www.qualitymetric.com/health-surveys/asthma-impact-survey-ais-6-qualitymetric/ | Nil | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Asthma | Asthma Impairment and Risk Questionnaire® | AIRQ | USA | 2020 | To assess symptom impairment and risk domains of asthma control. | 10 | No specific domains/dimensions identified | Yes | Murphy KR, Chipps B, Beuther DA, Wise RA, McCann W, Gilbert I, Eudicone JM, Gandhi HN, Harding G, Coyne KS, Zeiger RS; US PRECISION Advisory Board. Development of the Asthma Impairment and Risk Questionnaire (AIRQ): A Composite Control Measure. J Allergy Clin Immunol Pract. 2020 Jul-Aug;8(7):2263-2274.e5 Wise RA, Chipps B, Murphy KR, Beuther DA, Reibman J, McCann W, Gilbert I, Eudicone JM, Gandhi HN, Harding G, Cutts K. Confirmatory cross-sectional validation of the Asthma Impairment and Risk Questionnaire. The Journal of Allergy and Clinical Immunology: In Practice. 2023 Nov 1;11(11):3531-3. McCann W, Murphy KR, Zeiger RS, Beuther DA, Wise RA, Reibman J, George M, Gilbert I, Eudicone JM, Gandhi HN, Cutts K. Assessing meaningful change in the Asthma Impairment and Risk Questionnaire. Annals of Allergy, Asthma & Immunology. 2024 Feb 17. |
No copYesright or publiclYes available | Unknown | https://www.asthmaresourcecenter.com/ | None identified in March 2025 | None identified in March 2025 | ||
| Respiratory | Asthma | Asthma Life Impact Scale | ALIS | UK | 2010 | To assess the overall impact of asthma on patients' quality of life. | 22 | No specific domains/dimensions identified | Yes | Meads DM, McKenna SP, Doward LC, Pokrzywinski R, Revicki D, Hunter C, Glendenning GA. Development and validation of the asthma life impact scale (ALIS). Respiratory medicine. 2010 May 1;104(5):633-43. | Yes | Unknown | https://www.galen-research.com/measures-database/ | None identified in March 2025 | None identified in March 2025 | ||
| Respiratory | Asthma | About My Asthma | AMA | USA | 1998 | To assess quality of life from the perspective of children who have asthma. | 55 | No specific domains/dimensions identified | Yes | Mishoe SC, Baker RR, Poole S, Harrell LM, Arant CB, Rupp NT. Development of an instrument to assess stress levels and quality of life in children with asthma. Journal of Asthma. 1998 Jan 1;35(7):553-63. | Yes | Yes, fees may apply | © S.C. Mishoe, R.R. Baker, 1998; Shelly Mishoe, Department of Respiratory Therapy, Schools of Allied Health Sciences and Graduate Studies, Augusta, Georgia; SMISHOE@mail.mcg.edu | https://www.tandfonline.com/doi/pdf/10.3109/02770909809048958 | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Asthma | Asthma Nighttime Symptoms Diary | ANSD | USA | 2022 | To assess daily nighttime asthma symptoms among adolescents and adults in clinical trials (completed on waking). | 6 | No specific domains/dimensions identified | Yes | Gater A, Nelsen L, Coon CD, Eremenco S, O’Quinn S, Khan AH, Eckert L, Staunton H, Bonner N, Hall R, Krishnan JA. Asthma daytime symptom diary (ADSD) and asthma nighttime symptom diary (ANSD): measurement properties of novel patient-reported symptom measures. The Journal of Allergy and Clinical Immunology: In Practice. 2022 May 1;10(5):1249-59. | Yes | Unknown | https://www.c-pathcoas.org/ | Nil | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Asthma | Asthma Quality Of Life Questionnaire | AQLQ | USA | 1993 | To measure functional impairments troublesome to patients with asthma. | 32 | 4 | Symptoms; Activity limitation; Emotional function; Environmental stimuli | Yes | Juniper EF, Guyatt GH, Ferrie PJ, Griffith LE. Measuring quality of life in asthma. American Review of Respiratory Disease. 1993 Apr 1;147:832-. Juniper EF, Buist AS, Cox FM, Ferrie PJ, King DR. Validation of a standardized version of the Asthma Quality of Life Questionnaire. Chest. 1999 May 1;115(5):1265-70. Juniper EF, Guyatt GH, Cox FM, Ferrie PJ, King DR. Development and validation of the mini asthma quality of life questionnaire. European Respiratory Journal. 1999 Jul 1;14(1):32-8. Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M. Measuring quality of life in children with asthma. Quality of life research. 1996 Feb;5:35-46. Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M. Measuring quality of life in the parents of children with asthma. Quality of life research. 1996 Feb;5:27-34. Wing A, Upton J, Svensson K, Weller P, Fletcher M, Walker S. The standardized and mini versions of the PAQLQ are valid, reliable, and responsive measurement tools. Journal of clinical epidemiology. 2012 Jun 1;65(6):643-50. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/asthma-quality-of-life-ques… https://eprovide.mapi-trust.org/instruments/asthma-quality-of-life-ques… https://eprovide.mapi-trust.org/instruments/paediatric-asthma-quality-o… |
Nil | Yes | Apfelbacher CJ, Hankins M, Stenner P, Frew AJ, Smith HE. Measuring asthma‐specific quality of life: structured review. Allergy. 2011 Apr;66(4):439-57. Worth A, Hammersley V, Knibb R, Flokstra-de-Blok B, DunnGalvin A, Walker S, Dubois AE, Sheikh A. Patient-reported outcome measures for asthma: a systematic review. NPJ primary care respiratory medicine. 2014 Jun 26;24(1):1-8. |
| Respiratory | Asthma | Asthma Symptom Diary | ASD | USA | 2015 | To capture asthma symptoms and the patient's daily state on treatment through questions in morning (about nighttime symptoms) and questions in the evening (about symptoms since waking). | 10 | No specific domains/dimensions identified | Yes | Globe G, Martin M, Schatz M, Wiklund I, Lin J, von Maltzahn R, Mattera MS. Symptoms and markers of symptom severity in asthma—content validity of the asthma symptom diary. Health and quality of life outcomes. 2015 Dec;13:1-9. Globe G, Wiklund I, Lin J, Chen WH, Martin M, Mattera MS, von Maltzahn R, Feng JY, Chon Y, Viswanathan HN, Schatz M. Psychometric properties of the asthma symptom diary (ASD), a diary for use in clinical trials of persistent asthma. The Journal of Allergy and Clinical Immunology: in Practice. 2016 Jan 1;4(1):60-6. Globe G, Wiklund I, Lin J, Chen WH, Martin M, Mattera MS, von Maltzahn R, Feng JY, Chon Y, Viswanathan HN, Schatz M. Psychometric Properties of the Asthma Symptom Diary (ASD), a Diary for Use in Clinical Trials of Persistent Asthma. J Allergy Clin Immunol Pract . Jan-Feb 2016;4(1):60-6.e4. Globe G, Wiklund I, Mattera M, Zhang H, Revicki DA. Evaluating minimal important differences and responder definitions for the asthma symptom diary in patients with moderate to severe asthma. J Patient Rep Outcomes. 2019 Apr 3;3(1):22. |
Yes | Unknown | https://www.amgenmedinfo.com/s/au/submit-medical-enquiry?language=en_AU | Nil | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Asthma | Asthma Symptom Diary | ASD | USA | 1997 | To assess daily symptoms of asthma and days in which no symptoms are experienced as an outcome measure for clinical trials. | 4 | 2 | Daytime symptom scale; Night-time symptom question | Yes | Santanello NC, Barber BL, Reiss TF. Measurement characteristics of two asthma symptom diary scales for use in clinical trials. Eur Respir J. 1997 Mar;10(3):646-51. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/asthma-symptom-diary2 | Nil | None identified in March 2025 | None identified in March 2025 |
| Respiratory | Asthma | Asthma Therapy Assessment Questionnaire Adult | ATAQ Adult | USA | 1999 | To identify individuals with suboptimal asthma management. | 4 | 4 | Self-perception of asthma control; Missed work, school, or normal daily activities due to asthma; Nighttime waking due to asthma symptoms; Use of “quick relief” inhaler medication | Yes | Vollmer WM, Markson LE, O'Connor E. Association of asthma control with health care utilization and quality of life. Am J Respir Crit Care Med. 1999 Nov;160(5 Pt 1):1647-52 Markson LE, Vollmer WM, Fitterman L. Insight into patient dissatisfaction with asthma treatment. Arch Intern Med. 2001 Feb 12;161(3):379-84 Skinner EA, Diette GB, Algatt-Bergstrom PJ, Nguyen TT, Clark RD, Markson LE, Wu AW. The asthma therapy assessment questionnaire (ATAQ) for children and adolescents. Disease Management. 2004 Dec 1;7(4):305-13. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/asthma-therapy-assessment-questionnaire-adult | Nil | Yes | Isik E, Mack G, Sockrider MM, Fredland NM, Shegog R. Assessing Available Adolescent Self-Reported Measures for Asthma Management: A Systematic Literature Review. Pediatric Allergy, Immunology, and Pulmonology. 2023 Sep 1;36(3):69-89. |
| Respiratory | Asthma | Daily monitoring visual analog scales in MASK‐air® | MASK‐air® | 25 Countries | 2021 | To support allergic rhinitis patients in disease control through daily symptom monitoring. | 6 | No specific domains/dimensions identified | Yes | Sousa-Pinto B, Jácome C, Pereira AM, Regateiro FS, Almeida R, Czarlewski W, Kulus M, Shamji MH, Boulet LP, Bonini M, Brussino L, Canonica GW, Cruz AA, Gemicioglu B, Haahtela T, Kupczyk M, Kvedariene V, Larenas-Linnemann D, Louis R, Niedoszytko M, Pham-Thi N, Puggioni F, Romantowski J, Sastre J, Scichilone N, Taborda-Barata L, Ventura MT, Vieira RJ, Agache I, Bedbrook A, Bergmann KC, Amaral R, Azevedo LF, Bosnic-Anticevich S, Brusselle G, Buhl R, Cecchi L, Charpin D, Loureiro CC, de Blay F, Del Giacco S, Devillier P, Jassem E, Joos G, Jutel M, Klimek L, Kuna P, Laune D, Luna Pech J, Makela M, Morais-Almeida M, Nadif R, Neffen HE, Ohta K, Papadopoulos NG, Papi A, Pétré B, Sousa‐Pinto B, Eklund P, Pfaar O, Klimek L, Zuberbier T, Czarlewski W, Bédard A, Bindslev‐Jensen C, Bedbrook A, Bosnic‐Anticevich S, Brussino L. Validity, reliability, and responsiveness of daily monitoring visual analog scales in MASK‐air®. Clinical and Translational Allergy. 2021 Sep;11(7):e12062. Pfaar O, Yeverino DR, Cordeiro CR, Roche N, Sá-Sousa A, Samolinski B, Sheikh A, Ulrik CS, Usmani OS, Valiulis A, Vandenplas O, Vieira-Marques P, Yorgancioglu A, Zuberbier T, Anto JM, Fonseca JA, Bousquet J. Development and validation of an electronic daily control score for asthma (e-DASTHMA): a real-world direct patient data study. Lancet Digit Health. 2023 Apr;5(4):e227-e238 |
Yes | Unknown | https://www.mask-air.com/ | Nil | Yes | Vieira RJ, Sousa‐Pinto B, Cardoso‐Fernandes A, Jácome C, Portela D, Amaral R, Sá‐Sousa A, Pereira AM, Bousquet J, Fonseca JA. Control of allergic rhinitis and asthma test: a systematic review of measurement properties and COSMIN analysis. Clinical and Translational Allergy. 2022 Sep;12(9):e12194. | |
| Respiratory | Asthma | Inhaler Technique Questionnaire | InTeQ | France; UK | 2022 | To assess performances of inhaling steps in patients with asthma. | 5 | No specific domains/dimensions identified | Yes | Lizano-Barrantes C, Garin O, Dima AL, van Ganse E, de Bruin M, Belhassen M, Mayoral K, Pont À, Ferrer M. The Inhaler Technique Questionnaire (InTeQ): Development and Validation of a Brief Patient-Reported Measure. Int J Environ Res Public Health. 2022 Feb 23;19(5):2591 Lizano-Barrantes C, Garin O, Dima AL, Mayoral K, Pont A, Ortiz EM, Caballero-Rabasco MA, Praena-Crespo M, Valdesoiro-Navarrete L, Guerra MT, Bercedo-Sanz A. Inhaler Technique Questionnaire (InTeQ) in pediatric patients with asthma. World Journal of Pediatrics. 2023 Aug;19(8):798-804. |
No information | Unknown | Alexandra L. Dima, alexandra.dima@sjd.es | Nil | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Asthma | Onset of Effect Questionnaire | OEQ | USA | 2008 | To measure through weekly diary patients' perception and satisfaction with feeling an asthma medication working right away. | 2 | No specific domains/dimensions identified | Yes | Leidy NK, Mathias SD, Parasuraman BM, Patrick DL, Pathak D. Development and validation of an onset of effect questionnaire for patients with asthma. Allergy Asthma Proc. 2008 Nov-Dec;29(6):590-9 | Yes | Unknown | AstraZeneca, https://www.astrazeneca.com/patient-reported-outcomes/order-instrument… | Nil | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Asthma | Pediatric Asthma Diary | PAD | USA | 1999 | To assess daily symptoms of asthma in children and days in which no symptoms are experienced as an outcome measure for clinical trials. | 4 | 2 | Daytime symptom scale; Night-time symptom question | Yes | Santanello NC, Davies G, Galant SP. Validation of an asthma symptom diary for interventional studies. Arch Dis Child. 1999 May;80(5):414-20. Santanello NC, DeMuro-Mercon C, Davies G, Ostrom N, Noonan M, Rooklin A, Knorr B. Validation of a pediatric asthma caregiver diary. Journal of allergy and clinical immunology. 2000 Nov 1;106(5):861-6. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/pediatric-asthma-diary | Nil | Yes | Barrett A, Clark M, DeMuro C, Esser D. Proxy-reported questionnaires for young children with asthma: a structured review. European Respiratory Journal. 2013 Aug 1;42(2):513-26. Rattu A, Khaleva E, Brightling C, Dahlén SE, Bossios A, Fleming L, Chung KF, Melén E, Djukanovic R, Chaudhuri R, Exley A. Identifying and appraising outcome measures for severe asthma: a systematic review. European Respiratory Journal. 2023 Apr 1;61(4). |
| Respiratory | Asthma | Pediatric Asthma Quality of Life Questionnaire-Standardized | PAQLQ(S) | Canada | 1996 | To measure health-related quality of life in children with asthma. | 23 | 3 | Activity limitation; Symptoms; Emotional function | Yes | Juniper EF, Guyatt GH, Feeny DH et al. Measuring quality of life in children with asthma. Quality of Life Research 1996; 5: 35-46 Wing A, Upton J, Svensson K, Weller P, Fletcher M, Walker S. The standardized and mini versions of the PAQLQ are valid, reliable, and responsive measurement tools. Journal of clinical epidemiology. 2012 Jun 1;65(6):643-50. Everhart RS, Fiese BH. Development and initial validation of a pictorial quality of life measure for young children with asthma. Journal of Pediatric Psychology. 2009 Oct 1;34(9):966-76. |
Yes | Unknown | https://www.qoltech.co.uk/obtaining.html | Nil | Yes | Roncada C, Mattiello R, Pitrez PM, Sarria EE. Specific instruments to assess quality of life in children and adolescents with asthma. Jornal de Pediatria (Versão em Português). 2013 May 1;89(3):217-25. |
| Respiratory | Asthma | Severe Asthma Questionnaire | SAQ | UK | 2018 | To assess quality-of-life in patients with severe and difficult to treat asthma. | 16 | 3 | My life; My mind; My body | Yes | Hyland ME, Whalley B, Jones RC, Masoli M. A qualitative study of the impact of severe asthma and its treatment showing that treatment burden is neglected in existing asthma assessment scales. Quality of Life Research. 2015;24:631-9 Hyland ME, Lanario JW, Pooler J, Masoli M, Jones RC. How patient participation was used to develop a questionnaire that is fit for purpose for assessing quality of life in severe asthma. Health and quality of life outcomes. 2018;16(1):24 Hyland ME, Jones RC, Lanario JW, Masoli M. The construction and validation of the Severe Asthma Questionnaire (SAQ). Eur Respir J 2018; 52: 1800618 Lanario JW, Hyland ME, Menzies-Gow A, Mansur AH, Dodd JW, Fowler SJ, Jones RC, Masoli M. Validation of subscales of the Severe Asthma Questionnaire (SAQ) using exploratory factor analysis (EFA). Health and quality of life outcomes. 2020 Dec;18:1-0. |
Yes | Unknown | https://severeasthmaquestionnaire.com/ | Nil | Yes | Rattu A, Khaleva E, Brightling C, Dahlén SE, Bossios A, Fleming L, Chung KF, Melén E, Djukanovic R, Chaudhuri R, Exley A. Identifying and appraising outcome measures for severe asthma: a systematic review. European Respiratory Journal. 2023 Apr 1;61(4). |
| Respiratory | Asthma; Chronic obstructive pulmonary disease (COPD) | COPD And Asthma Sleep Impact Scale | CASIS | UK; USA | 2009 | To assess sleep impairment associated with chronic obstructive pulmonary disease and asthma. | 7 | No specific domains/dimensions identified | Yes | Pokrzywinski RF, Meads DM, McKenna SP, Glendenning GA, Revicki DA. Development and psychometric assessment of the COPD and Asthma Sleep Impact Scale (CASIS). Health and Quality of Life Outcomes. 2009 Dec;7:1-0. | No information | Unknown | R F Pokrzywinksi, robin.pokrzywinski@unitedbiosource.com | https://static-content.springer.com/esm/art%3A10.1186%2F1477-7525-7-98/MediaObjects/12955_2009_615_MOESM1_ESM.DOC | Yes | Garrow AP, Yorke J, Khan N, Vestbo J, Singh D, Tyson S. Systematic literature review of patient-reported outcome measures used in assessment and measurement of sleep disorders in chronic obstructive pulmonary disease. International journal of chronic obstructive pulmonary disease. 2015 Feb 9:293-307. | |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Breathlessness, Cough And Sputum Scale | BCSS | 15 countries (not listed) | 2003 | To track the severity of three symptoms of chronic obstructive pulmonary disease (breathing, cough, sputum) in the form of a daily diary. | 3 | No specific domains/dimensions identified | Yes | Leidy NK, Rennard SI, Schmier J, Jones MK, Goldman M. The breathlessness, cough, and sputum scale: the development of empirically based guidelines for interpretation. Chest. 2003 Dec 1;124(6):2182-91. Leidy NK, Schmier JK, Jones MK, Lloyd J, Rocchiccioli K. Evaluating symptoms in chronic obstructive pulmonary disease: validation of the Breathlessness, Cough and Sputum Scale©. Respiratory medicine. 2003 Jan 1;97:S59-70. |
Yes | Unknown | https://www.astrazeneca.com/patient-reported-outcomes/respiratory.html | https://www.astrazeneca.com/content/dam/az/orphan-page-files/Patient%20… | Yes | Cazzola M, Hanania NA, MacNee W, Rüdell K, Hackford C, Tamimi N. A review of the most common patient-reported outcomes in COPD–revisiting current knowledge and estimating future challenges. International journal of chronic obstructive pulmonary disease. 2015 Apr 7:725-38. Oliveira AL, Marques AS. Outcome measures used in pulmonary rehabilitation in patients with acute exacerbation of chronic obstructive pulmonary disease: a systematic review. Physical therapy. 2018 Mar;98(3):191-204. |
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| Respiratory | Chronic obstructive pulmonary disease (COPD) | Chronic Airways Assessment Test | CAAT | Argentina; Australia; Brazil; Canada; mainland China; Colombia; Denmark; France; Germany; Italy; Japan; Mexico; The Netherland; Norway; South Korea; Spain; Sweden; UK; USA | 2021 | To measure health status across different obstructive lung diseases. | 8 | No specific domains/dimensions identified | Yes | Tomaszewski EL, Atkinson MJ, Janson C, Karlsson N, Make B, Price D, Reddel HK, Vogelmeier CF, Müllerová H, Jones PW. Validation of the Chronic Airways Assessment Test in the NOVELTY Study. Am J Respir Crit Care Med 2021;203:A1661 Tomaszewski EL, Atkinson MJ, Janson C, Karlsson N, Make B, Price D, Reddel HK, Vogelmeier CF, Müllerová H, Jones PW; NOVELTY Scientific Community; NOVELTY study investigators. Chronic Airways Assessment Test: psychometric properties in patients with asthma and/or COPD. Respir Res. 2023 Apr 8;24(1):106 |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/chronic-airways-assessment-test | Nil | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Chronic Respiratory Questionnaire/Chronic Respiratory Disease Questionnaire | CRQ | Canada | 1987 | To assess health-related quality-of-life in patients with chronic obstructive pulmonary disease. | 49 | 4 | Shortness of breath; Fatigue; Emotional function; Mastery or feeling of control over the disease | Yes | Guyatt GH, Berman LB, Townsend M, Pugsley SO, Chambers LW. A measure of quality of life for clinical trials in chronic lung disease. Thorax 1987; 42:773-8 Williams JE, Singh SJ, Sewell L, Guyatt GH, Morgan MD. Development of a self-reported Chronic Respiratory Questionnaire (CRQ-SR). Thorax. 2001 Dec 1;56(12):954-9. |
Yes | Unknown | https://qol.thoracic.org/sections/instruments/ae/pages/crq.html | Nil | Yes | Bausewein C, Farquhar M, Booth S, Gysels M, Higginson IJ. Measurement of breathlessness in advanced disease: a systematic review. Respiratory medicine. 2007 Mar 1;101(3):399-410. Cazzola M, Hanania NA, MacNee W, Rüdell K, Hackford C, Tamimi N. A review of the most common patient-reported outcomes in COPD–revisiting current knowledge and estimating future challenges. International journal of chronic obstructive pulmonary disease. 2015 Apr 7:725-38. |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Clinical COPD Questionnaire | CCQ | The Netherlands; USA | 2003 | To assess clinical control in patients with COPD. | 10 | 3 | Symptoms; Functional; Mental state | Yes | Van der Molen T, Willemse BW, Schokker S, Ten Hacken NH, Postma DS, Juniper EF. Development, validity and responsiveness of the Clinical COPD Questionnaire. Health and quality of life outcomes. 2003 Dec;1:1-0. Zhou Z, Zhou A, Zhao Y, Chen P. Evaluating the clinical COPD questionnaire: a systematic review. Respirology. 2017 Feb;22(2):251-62. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/clinical-copd-questionnaire | Nil | Yes | Noud M, Hovis K, Gelbard A, Sathe NA, Penson DF, Feurer ID, McPheeters ML, Francis DO. Patient-reported outcome measures in upper airway–related dyspnea: a systematic review. JAMA Otolaryngology–Head & Neck Surgery. 2017 Aug 1;143(8):824-31. Cazzola M, Hanania NA, MacNee W, Rüdell K, Hackford C, Tamimi N. A review of the most common patient-reported outcomes in COPD–revisiting current knowledge and estimating future challenges. International journal of chronic obstructive pulmonary disease. 2015 Apr 7:725-38. Weldam SW, Schuurmans MJ, Liu R, Lammers JW. Evaluation of quality of life instruments for use in COPD care and research: a systematic review. International journal of nursing studies. 2013 May 1;50(5):688-707. |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | COPD Assessment Test | CAT | Germany; The Netherlands; Spain; USA | 2009 | To quantify the impact of chronic obstructive pulmonary disease on health status. | 8 | No specific domains/dimensions identified | Yes | Jones PW, Harding G, Berry P, Wiklund I, Chen WH, Kline Leidy N. Development and first validation of the COPD Assessment Test. Eur Respir J. 2009 Sep;34(3):648-54 | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/copd-assessment-test | Nil | Yes | Cazzola M, Hanania NA, MacNee W, Rüdell K, Hackford C, Tamimi N. A review of the most common patient-reported outcomes in COPD–revisiting current knowledge and estimating future challenges. International journal of chronic obstructive pulmonary disease. 2015 Apr 7:725-38. |
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| Respiratory | Chronic obstructive pulmonary disease (COPD) | Cough and Sputum Assessment Questionnaire | CASA-Q | France; Germany; Japan; Spain; UK; USA | 2008 | To measure cough and sputum symptoms and their impact on patients' daily activities. | 20 | 4 | Cough symptoms; Cough impact; Sputum symptoms; Sputum impact | Yes | Crawford B, Monz B, Hohlfeld J, Roche N et al. Development and validation of a cough and sputum assessment questionnaire. Respiratory medicine. 2008;102(11):1545-1555 | Yes | Unknown | https://www.boehringer-ingelheim.com/contact-us | Nil | Yes | Schmit KM, Coeytaux RR, Goode AP, McCrory DC, Yancy Jr WS, Kemper AR, Hasselblad V, Heidenfelder BL, Sanders GD. Evaluating cough assessment tools: a systematic review. Chest. 2013 Dec 1;144(6):1819-26. McCrory DC, Coeytaux RR, Yancy Jr WS, Schmit KM, Kemper AR, Goode A, Hasselblad V, Heidenfelder BL, Irvine RJ, Musty MD, Gray R. Assessment and management of chronic cough. |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | EXAcerbation Of Chronic Pulmonary Disease Tool | EXACT, EXACT-PRO | USA | 2010 | To assess the frequency, severity and duration of exacerbations of chronic obstructive pulmonary disease. | 14 | No specific domains/dimensions identified | Yes | Leidy NK, Wilcox TK, Jones PW, Murray L, Winnette R, Howard K, Petrillo J, Powers J, Sethi S, EXACT-PRO Study Group. Development of the EXAcerbations of Chronic Obstructive Pulmonary Disease Tool (EXACT): a patient-reported outcome (PRO) measure. Value in health. 2010 Dec 1;13(8):965-75. Leidy NK, Wilcox TK, Jones PW, Roberts L, Powers JH, Sethi S. Standardizing measurement of chronic obstructive pulmonary disease exacerbations: reliability and validity of a patient-reported diary. American journal of respiratory and critical care medicine. 2011 Feb 1;183(3):323-9. |
Yes | Unknown | https://www.evidera.com/what-we-do/patient-centered-research/coa-instrument-management-services/exact-program/exact-content/ | Nil | Yes | Cazzola M, Hanania NA, MacNee W, Rüdell K, Hackford C, Tamimi N. A review of the most common patient-reported outcomes in COPD–revisiting current knowledge and estimating future challenges. International journal of chronic obstructive pulmonary disease. 2015 Apr 7:725-38. | |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | EXACT - Respiratory Symptom/Evaluating Respiratory Symptoms | E-RS | Australia; Bulgaria; Canada; Czech Republic; Germany; Hungary; Japan; Korea; Philippines; Poland; Romania; Russia; Slovakia; Taiwan; Ukraine; United States | 2014 | To evaluate the effect of treatment on respiratory symptoms of chronic obstructive pulmonary disease through daily diary. | 11 | 3 | Breathlessness; Cough and sputum; Chest symptoms | Yes | Leidy NK, Murray LT, Monz BU, Nelsen L, Goldman M, Jones PW, Dansie EJ, Sethi S. Measuring respiratory symptoms of COPD: performance of the EXACT- Respiratory Symptoms Tool (E-RS) in three clinical trials. Respir Res. 2014 Oct 7;15(1):124 Bacci ED, O'Quinn S, Leidy NK, Murray L, Vernon M. Evaluation of a respiratory symptom diary for clinical studies of idiopathic pulmonary fibrosis. Respiratory Medicine. 2018 Jan 1;134:130-8. |
Yes | Unknown | exactpro@evidera.com, https://www.evidera.com/what-we-do/patient-centered-research/coa-instru… | Nil | Yes | Oliveira A, Habash R, Ellerton L, Maybank A, Alsubheen S, Marques A, Goldstein R, Brooks D. Interstitial lung diseases specific measures in exercise interventions: A systematic review of measurement properties. Annals of Physical and Rehabilitation Medicine. 2023 Feb 1;66(1):101682. Cazzola M, Hanania NA, MacNee W, Rüdell K, Hackford C, Tamimi N. A review of the most common patient-reported outcomes in COPD–revisiting current knowledge and estimating future challenges. International journal of chronic obstructive pulmonary disease. 2015 Apr 7:725-38. |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Human Activity Profile | HAP | USA | 1982 | To evaluate energy expenditure or physical fitness, validated for use in a wide variety of clinical populations (e.g., chronic pain, arthritis, renal failure). | 94 | No specific domains/dimensions identified | Yes | Daughton DM, Fix AJ, Kass I, Bell CW, Patil KD. Maximum oxygen consumption and the ADAPT quality-of-life scale. Arch Phys Med Rehabil. 1982 Dec;63(12):620-2 Fix A, Daughton D. Human Activity Profile (HAP) Manual. Odessa, FL, Psychological Assessment Resources Inc., 1986 Davidson M, de Morton N. A systematic review of the Human Activity Profile. Clinical rehabilitation. 2007 Feb;21(2):151-62. |
No information | Unknown | D M Daughton, DDAUGHTO@UNMC.EDU | Nil | Yes | Terwee CB, Bouwmeester W, Van Elsland SL, De Vet HC, Dekker J. Instruments to assess physical activity in patients with osteoarthritis of the hip or knee: a systematic review of measurement properties. Osteoarthritis and cartilage. 2011 Jun 1;19(6):620-33. Ashford S, Brown S, Turner-Stokes L. Systematic review of patient-reported outcome measures (PROMS) for functional performance in the lower limb. Journal of rehabilitation medicine. 2015;47(1):9-17. |
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| Respiratory | Chronic obstructive pulmonary disease (COPD) | Living With Chronic Obstructive Pulmonary Disease | LCOPD | UK; USA | 2011 | To examine the everyday impact of living with chronic obstructive pulmonary disease from the patient's perspective. | 22 | No specific domains/dimensions identified | Yes | McKenna SP, Meads DM, Doward LC, Twiss J, Pokrzywinski R, Revicki D, Hunter CJ, Glendenning GA. Development and validation of the living with chronic obstructive pulmonary disease questionnaire. Quality of Life Research. 2011 Sep;20:1043-52. | Yes | Unknown | https://www.galen-research.com/measures-database/ | Nil | Yes | Cazzola M, Hanania NA, MacNee W, Rüdell K, Hackford C, Tamimi N. A review of the most common patient-reported outcomes in COPD–revisiting current knowledge and estimating future challenges. International journal of chronic obstructive pulmonary disease. 2015 Apr 7:725-38. Weldam SW, Schuurmans MJ, Liu R, Lammers JW. Evaluation of quality of life instruments for use in COPD care and research: a systematic review. International journal of nursing studies. 2013 May 1;50(5):688-707. |
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| Respiratory | Chronic obstructive pulmonary disease (COPD) | London Chest Activity Of Daily Living Scale | LCADL | UK | 2000 | To assess routine activities of daily living in patients with chronic obstructive pulmonary disease. | 15 | 4 | Domestic; Self-care; Physical; Leisure | Yes | Garrod R, Bestall JC, Paul EA, Wedzicha JA, Jones PW. Development and validation of a standardized measure of activity of daily living in patients with severe COPD: the London Chest Activity of Daily Living scale (LCADL). Respiratory medicine. 2000 Jun 1;94(6):589-96. | Yes | Unknown | Copyright held by St George’s Hospital Medical School. | https://pdf.sciencedirectassets.com/272432/1-s2.0-S0954611100X00212/1-s… | Yes | Tinti S, Parati M, De Maria B, Urbano N, Sardo V, Falcone G, Terzoni S, Alberti A, Destrebecq A. Multi-dimensional dyspnea-related scales validated in individuals with cardio-respiratory and cancer diseases. A systematic review of psychometric properties. Journal of Pain and Symptom Management. 2022 Jan 1;63(1):e46-58. Kocks JW, Asijee GM, Tsiligianni IG, Kerstjens HA, van der Molen T. Functional status measurement in COPD: a review of available methods and their feasibility in primary care. Primary care respiratory journal. 2011 Sep;20(3):269-75. |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Lung Function Questionnaire | LFQ | USA | 2010 | To identify patients for diagnostic evaluation for chronic obstructive pulmonary disease. | 5 | No specific domains/dimensions identified | Yes | Yawn BP, Mapel DW, Mannino DM, Martinez FJ, Donohue JF, Hanania NA, Kosinski M, Rendas-Baum R, Mintz M, Samuels S, Dalal AA; Lung Function Questionnaire Working Group. Development of the Lung Function Questionnaire (LFQ) to identify airflow obstruction. Int J Chron Obstruct Pulmon Dis. 2010 Feb 18;5:1-10 Dalal AA, Nelson L, Gilligan T, McLeod L, Lewis S, DeMuro-Mercon C. Evaluating patient-reported outcome measurement comparability between paper and alternate versions, using the lung function questionnaire as an example. Value in Health. 2011 Jul 1;14(5):712-20. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/lung-function-questionnaire | Nil | None identified in March 2025 | None identified in March 2025 | |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | McGill Chronic Obstructive Pulmonary Disease Quality of Life Questionnaire | McGill COPD | Canada | 2011 | To measure health-related quality of life in chronic obstructive pulmonary disease covering both generic- and condition-specific aspects. | 29 | 3 | Symptoms; Physical function; Feelings | Yes | Pakhale S, Wood-Dauphinee S, Spahija J, Collet JP, Maltais F, Bernard S, Baltzan M, Rouleau M, Bourbeau J. Combining both generic and disease-specific properties: development of the McGill COPD Quality of Life Questionnaire. COPD: Journal of Chronic Obstructive Pulmonary Disease. 2011 Aug 18;8(4):255-63. Pakhale S, Wood-Dauphinee S, Spahija A, Collet JP, Maltais F, Bernard S, Baltzan M, Rouleau M, Bourbeau J; Respiratiory Network of the FRSQ. Validation of a new questionnaire with generic and disease-specific qualities: the McGill COPD Quality of Life Questionnaire. Can Respir J. 2012 Nov-Dec;19(6):367-72 |
No information | Unknown | Jean Bourbea, jean.bourbeau@mcgill.ca | Nil | Yes | Cazzola M, Hanania NA, MacNee W, Rüdell K, Hackford C, Tamimi N. A review of the most common patient-reported outcomes in COPD–revisiting current knowledge and estimating future challenges. International journal of chronic obstructive pulmonary disease. 2015 Apr 7:725-38. |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Morning Activity And Symptoms Questionnaire | MASQ | UK | 2010 | To measure morning activities and morning symptoms in patients with chronic obstructive pulmonary disease. | 8 | 2 | Comprised of two questionnaires: Capacity of Daily Living during the Morning (CDLM) and Global Chest Symptoms Questionnaire (GCSQ). The GCSQ is completed shortly after waking, while the CDLM is completed before noon and after completing all activities. | Yes | Partridge MR, Miravitlles M, Ståhl E, Karlsson N, Svensson K, Welte T. Development and validation of the Capacity of Daily Living during the Morning questionnaire and the Global Chest Symptoms Questionnaire in COPD. European Respiratory Journal. 2010 Jul 1;36(1):96-104. | Yes | Unknown | https://www.astrazeneca.com/patient-reported-outcomes/respiratory.html | https://www.astrazeneca.com/content/dam/az/orphan-page-files/Patient%20… | Yes | Janaudis-Ferreira T, Beauchamp MK, Robles PG, Goldstein RS, Brooks D. Measurement of activities of daily living in patients with COPD: a systematic review. Chest. 2014 Feb 1;145(2):253-71. |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Pulmonary Rehabilitation Adapted Index of Self-Efficacy | PRAISE | UK | 2011 | To measure self-efficacy at the time of a course of pulmonary rehabilitation. | 15 | No specific domains/dimensions identified | Yes | Vincent E, Sewell L, Wagg K, Deacon S, Williams J, Singh S. Measuring a change in self-efficacy following pulmonary rehabilitation: an evaluation of the PRAISE tool. Chest. 2011 Dec;140(6):1534-1539. | No information | Unknown | Emma Vincent, BSc, Pulmonary Rehabilitation Research Group, Department of Respiratory Medicine and Thoracic Surgery, Glenfield Hospital, University Hospitals of Leicester NHS Trust, Groby Rd, Leicester, LE3 9QP, England, emma.vincent@uhl-tr.nhs.uk | Nil | Yes | Alsubheen SA, Wshah A, Goldstein R, Brooks D. Psychometric properties of patient-reported outcome measures assessing self-efficacy in patients with chronic obstructive pulmonary disease (COPD): a systematic review. COPD: Journal of Chronic Obstructive Pulmonary Disease. 2021 Mar 4;18(2):254-63. | |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | University of California San Diego Shortness of Breath Questionnaire | SOBQ | USA | 1987 | To measure severity of shortness of breath during activities of daily living, and limitation. | 24 | No specific domains/dimensions identified | Yes | Archibald CJ, Guidotti TL. Degree of objectively measured impairment and perceived shortness of breath with activities of daily living in patients with chronic obstructive pulmonary disease. Canadian Journal of Rehabilitation. 1987. Eakin EG, Resnikoff PM, Prewitt LM, Ries AL, Kaplan RM. Validation of a new dyspnea measure: the UCSD Shortness of Breath Questionnaire. Chest. 1998 Mar 1;113(3):619-24. |
Yes | Unknown | https://eprovide.mapi-trust.org/instruments/the-university-of-california-san-diego-shortness-of-breath-questionnaire | Nil | Yes | Dorman S, Byrne A, Edwards A. Which measurement scales should we use to measure breathlessness in palliative care? A systematic review. Palliative Medicine. 2007 Apr;21(3):177-91. | |
| Respiratory | Chronic obstructive pulmonary disease (COPD); Anxiety | Anxiety Inventory For Respiratory Disease | AIR | UK | 2013 | To assess anxiety in patients with chronic obstructive pulmonary disease. | 10 | 2 | General anxiety; Panic symptoms | Yes | Willgoss TG, Goldbart J, Fatoye F, Yohannes AM. The development and validation of the anxiety inventory for respiratory disease. Chest. 2013 Nov 1;144(5):1587-96. | Yes | Unknown | A Yohannes, A.yohannes@mmu.ac.uk | https://www.researchgate.net/publication/254267896_The_Development_and_… | None identified in March 2025 | None identified in March 2025 |
| Respiratory | Chronic respiratory disease; Asthma; Chronic obstructive pulmonary disease (COPD) | St Georges Respiratory Questionnaire | SGRQ | UK | 1991 | To measure health related quality of life in chronic airway related diseases. | 50 | 3 | Symptoms; Activities; Impact of disease on daily life | Yes | Jones PW, Quirk FH, Baveystock CM. The St George's respiratory questionnaire. Respiratory medicine. 1991 Sep 1;85:25-31. Jones PW, Quirk FH, Baveystock CM, Littlejohns P. A self-complete measure of health status for chronic airflow limitation. Am Rev Respir Dis. 1992 Jun;145(6):1321-7. Barr JT, Schumacher GE, Freeman S, LeMoine M, Bakst AW, Jones PW. American translation, modification, and validation of the St. George's Respiratory Questionnaire. Clinical therapeutics. 2000 Sep 1;22(9):1121-45. |
Yes | Unknown | https://www.sralab.org/rehabilitation-measures/saint-georges-respirator… | Nil | Yes | Weldam SW, Schuurmans MJ, Liu R, Lammers JW. Evaluation of quality of life instruments for use in COPD care and research: a systematic review. International journal of nursing studies. 2013 May 1;50(5):688-707. |
| Respiratory | Pulmonary arterial hypertension | Pulmonary Arterial Hypertension Symptoms And Impact | PAH-Sympact | USA | 2018 | To assess pulmonary arterial hypertension symptoms and their impact. | 23 | 2 | Presence; Severity | Yes | McCollister D, Shaffer S, Badesch DB, Filusch A, Hunsche E, Schüler R, Wiklund I, Peacock A. Development of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT®) questionnaire: a new patient-reported outcome instrument for PAH. Respiratory Research. 2016 Dec;17:1-2. Chin KM, Gomberg-Maitland M, Channick RN, Cuttica MJ, Fischer A, Frantz RP, Hunsche E, Kleinman L, McConnell JW, McLaughlin VV, Miller CE. Psychometric validation of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT) questionnaire: results of the SYMPHONY trial. Chest. 2018 Oct 1;154(4):848-61. |
Yes | Unknown | Deborah McCollister Division of Pulmonary Sciences and Critical Care Medicine, University of Colorado Denver, 12401 E. 17th Ave., Box L957, Aurora, CO 80045 USA | Nil | None identified in March 2025 | None identified in March 2025 |
| Respiratory | Pulmonary hypertension | EmPHasis-10 | EmPHasis-10 | UK | 2014 | To measure impact of pulmonary hypertension on health-related quality of life. | 10 | No specific domains/dimensions identified | Yes | Yorke J, Corris P, Gaine S, Gibbs JS, Kiely DG, Harries C, Pollock V, Armstrong I. emPHasis-10: development of a health-related quality of life measure in pulmonary hypertension. Eur Respir J. 2014 Apr;43(4):1106-13 | Yes | Unknown | Janelle Yorke, Midwifery and Social Work, University of Manchester, Manchester | Nil | Yes | Rose SW, Highland KB, Kelkar AA. Clinical utility of patient-reported outcome instruments in the management of pulmonary hypertension: a systematic review. Heart Failure. 2024 Feb 1;12(2):366-76. Yarlas A, Mathai SC, Nathan SD, DuBrock HM, Morland K, Anderson N, Kosinski M, Lin X, Classi P. Considerations when selecting patient-reported outcome measures for assessment of health-related quality of life in patients with pulmonary hypertension: a narrative review. Chest. 2022 Nov 1;162(5):1163-75. |
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| Skin | Dermatitis, Atopic | Atopic Dermatitis Control Tool | ADCT | USA | 2019 | To measure atopic dermatitis disease control. | 6 | No specific domains/dimensions identified | Yes | Pariser DM, Simpson EL, Gadkari A, Bieber T, Margolis DJ, Brown M, Nelson L, Mahajan P, Reaney M, Guillemin I, Mallya UG. Evaluating patient-perceived control of atopic dermatitis: design, validation, and scoring of the Atopic Dermatitis Control Tool (ADCT). Current Medical Research and Opinion. 2020 Mar 3;36(3):367-76. | Yes | Yes, fees may apply | Laurent Eckert, Health Economics Value Assessment, Sanofi, Chilly Mazarin, France; Laurent.Eckert@sanofi.com | Nil | Yes | Stuart BL, Howells L, Pattinson RL, Chalmers JR, Grindlay D, Rogers NK, Grinich E, Pawlitschek T, Simpson EL, Thomas KS. Measurement properties of patient‐reported outcome measures for eczema control: a systematic review. Journal of the European Academy of Dermatology and Venereology. 2021 Oct;35(10):1987-93. | |
| Skin | Dermatitis, Atopic | Atopic Dermatitis Impact Scale | ADerm-IS | USA | 2023 | To assess sign and symptom severity and associated impacts. | 11 | 3 | Sleep; Daily Activities; Emotional State | Yes | Foley C, Tundia N, Simpson E, Teixeira HD, Litcher-Kelly L, Bodhani A. Development and content validity of new patient-reported outcome questionnaires to assess the signs and symptoms and impact of atopic dermatitis: the Atopic Dermatitis Symptom Scale (ADerm-SS) and the Atopic Dermatitis Impact Scale (ADerm-IS). Curr Med Res Opin. 2019 Jul;35(7):1139-1148. Silverberg JI, Leshem YA, Calimlim BM, McDonald J, Litcher-Kelly L. Psychometric evaluation of the Worst Pruritus Numerical Rating Scale (NRS), Atopic Dermatitis Symptom Scale (ADerm-SS), and Atopic Dermatitis Impact Scale (ADerm-IS). Current medical research and opinion. 2023 Oct 3;39(10):1289-96. |
Yes | Unknown | Instrument copyrighted by Adelphi Values and AbbVie | Nil | Yes | Schmitt J, Langan S, Williams HC. What are the best outcome measurements for atopic eczema? A systematic review. Journal of Allergy and Clinical Immunology. 2007;120(6):1389-1398. doi:10.1016/j.jaci.2007.08.011 Gabes M, Donhauser T, Piontek K, Kann G, Fechtner M, Gulde I, Knuettel H, Apfelbacher C, quality of life working group of the Harmonising Outcome Measures for Eczema (HOME) initiative. Measurement properties of quality‐of‐life outcome measures for children and adults with eczema: A systematic review update 2.0. Pediatric Allergy and Immunology. 2023 Mar;34(3):e13934. |
| Skin | Dermatitis, Atopic | Atopic Dermatitis Symptom Scale | ADerm-SS | USA | 2023 | To assess sign and symptom severity and associated impacts. | 10 | 2 | Signs and Symptoms; Pain | Yes | Foley C, Tundia N, Simpson E, Teixeira HD, Litcher-Kelly L, Bodhani A. Development and content validity of new patient-reported outcome questionnaires to assess the signs and symptoms and impact of atopic dermatitis: the Atopic Dermatitis Symptom Scale (ADerm-SS) and the Atopic Dermatitis Impact Scale (ADerm-IS). Curr Med Res Opin. 2019 Jul;35(7):1139-1148. Silverberg JI, Leshem YA, Calimlim BM, McDonald J, Litcher-Kelly L. Psychometric evaluation of the Worst Pruritus Numerical Rating Scale (NRS), Atopic Dermatitis Symptom Scale (ADerm-SS), and Atopic Dermatitis Impact Scale (ADerm-IS). Current medical research and opinion. 2023 Oct 3;39(10):1289-96. |
Yes | Unknown | Instrument copyrighted by Adelphi Values and AbbVie | Nil | Yes | Penton H, Jayade S, Selveindran S, Heisen M, Piketty C, Ulianov L, Jabbar-Lopez ZK, Silverberg JI, Puelles J. Assessing Response in Atopic Dermatitis: A Systematic Review of the Psychometric Performance of Measures Used in HTAs and Clinical Trials. Dermatology and Therapy. 2023 Nov;13(11):2549-71. |
| Skin | Dermatitis, Atopic | Peak Pruritus Numerical Rating Scale | PP-NRS | USA | 2019 | To evaluate worst itch intensity in adults with moderate-to-severe Atopic Dermatitis. | 1 | No specific domains/dimensions identified | Yes | Yosipovitch G, Reaney M, Mastey V, Eckert L, Abbé A, Nelson L, Clark M, Williams N, Chen Z, Ardeleanu M, Akinlade B. Peak Pruritus Numerical Rating Scale: psychometric validation and responder definition for assessing itch in moderate‐to‐severe atopic dermatitis. British Journal of Dermatology. 2019 Oct 1;181(4):761-9. | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/peak-pruritus-numerical-rat… | Nil | Yes | Penton H, Jayade S, Selveindran S, Heisen M, Piketty C, Ulianov L, Jabbar-Lopez ZK, Silverberg JI, Puelles J. Assessing Response in Atopic Dermatitis: A Systematic Review of the Psychometric Performance of Measures Used in HTAs and Clinical Trials. Dermatology and Therapy. 2023 Nov;13(11):2549-71. Schoch D, Sommer R, Augustin M, Ständer S, Blome C. Patient-reported outcome measures in pruritus: a systematic review of measurement properties. Journal of Investigative Dermatology. 2017 Oct 1;137(10):2069-77 |
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| Skin | Dermatitis, Atopic | Quality Of Life Index For Atopic Dermatitis | QoLIAD | UK | 2004 | To assess the quality of life of adult patients with atopic dermatitis. | 25 | No specific domains/dimensions identified | Yes | Whalley D, McKenna SP, Dewar AL, Erdman RA, Kohlmann T, Niero M, Cook SA, Crickx B, Herdman MJ, Frech F, Van Assche D. A new instrument for assessing quality of life in atopic dermatitis: international development of the Quality of Life Index for Atopic Dermatitis (QoLIAD). British Journal of Dermatology. 2004 Feb 1;150(2):274-83. | Yes | Unknown | Dr Stephen P.McKenna at Galen Research, Enterprise House, Lloyd Street North, Manchester M15 6SE, U.K. (E‐mail: smckenna@galen‐research.com) | Nil | Yes | Kitchen H, Cordingley L, Young H, Griffiths CE, Bundy C. Patient‐reported outcome measures in psoriasis: the good, the bad and the missing!. British Journal of Dermatology. 2015 May 1;172(5):1210-21 | |
| Skin | Dermatitis, Atopic | Recap of Atopic Eczema | RECAP | UK | 2020 | To capture a patient's perspective of eczema control in clinical trials | 7 | No specific domains/dimensions identified | Yes | Howells LM, Chalmers JR, Gran S, Ahmed A, Apfelbacher C, Burton T, Howie L, Lawton S, Ridd MJ, Rogers NK, Sears AV, Spuls P, von Kobyletzki L, Thomas KS. Development and initial testing of a new instrument to measure the experience of eczema control in adults and children: Recap of atopic eczema (RECAP). Br J Dermatol. 2020 Sep;183(3):524-536 | Yes | Unknown | https://www.nottingham.ac.uk/research/groups/cebd/resources/recap.aspx | Nil | Yes | Stuart, B.L., Howells, L., Pattinson, R.L., Chalmers, J.R., Grindlay, D., Rogers, N.K., Grinich, E., Pawlitschek, T., Simpson, E.L. and Thomas, K.S. (2021), Measurement properties of patient-reported outcome measures for eczema control: a systematic review. J Eur Acad Dermatol Venereol, 35: 1987-1993. https://doi.org/10.1111/jdv.17335 | |
| Skin | Dermatitis, Atopic | Scratch Intensity and Impact Scale | SIIS | USA | 2020 | To assess the behavioural and psychosocial aspects, intensity, and impact of scratching. | 13 | 2 | Scratching intensity; Impact of scratching on quality of life | Yes | Heckman CJ, Riley M, Valdes-Rodriguez R, Yosipovitch G. Development and Initial Psychometric Properties of Two Itch-Related Measures: Scratch Intensity and Impact, Sleep-Related Itch and Scratch. J Invest Dermatol. 2020 Nov;140(11):2138-2145.e1 | No information | Unknown | Carolyn J. Heckman, 195 Little Albany Street, New Brunswick, New Jersey 08901. ch842@rutgers.edu | Nil | Yes | Gabes M, Tischer C, Apfelbacher C, Quality of Life working group of the Harmonising Outcome Measures for Eczema (HOME) initiative. Measurement properties of quality‐of‐life outcome measures for children and adults with eczema: an updated systematic review. Pediatric allergy and immunology. 2020 Jan;31(1):66-77. |
| Skin | Dermatitis, Atopic | Skin Pain Numerical Rating Scale | SP-NRS | USA | 2019 | To capture information on the self-reported skin pain severity by rating “the worst level of skin pain in the past 24 hours.” | 1 | No specific domains/dimensions identified | Yes | Newton L, DeLozier AM, Griffiths PC, Hill JN, Hudgens S, Symonds T, Gable JC, Paik J, Wyrwich KW, Eichenfield LF, Abetz-Webb L, Silverberg JI. Exploring content and psychometric validity of newly developed assessment tools for itch and skin pain in atopic dermatitis. J Patient Rep Outcomes. 2019 Jul 16;3(1):42 Humphrey L, Symonds T, Gable J, Abetz-Webb L, Silverberg JI, Griffiths P, Eichenfield LF, Wyrwich KW, Paik J, DeLozier AM. Validity and interpretation of a skin pain numeric rating scale among adults and adolescents with atopic dermatitis. Value in Health. 2017 Oct 1;20(9):A806. |
Yes | Unknown | Jonathan Silverberg, jsilverberg@mfa.gwu.edu | Nil | None identified in March 2025 | None identified in March 2025 | |
| Skin | Dermatitis, Atopic | Sleep Disturbance Numerical Rating Scale | SD-NRS | USA | 2020 | To assess sleep disturbance associated with atopic dermatitis and prurigo nodularis. | 1 | No specific domains/dimensions identified | Yes | Dias-Barbosa C, Matos R, Vernon M, Carney CE, Krystal A, Puelles J. Content validity of a sleep numerical rating scale and a sleep diary in adults and adolescents with moderate-to-severe atopic dermatitis. J Patient Rep Outcomes. 2020 Nov 23;4(1):100 | Yes | Yes, fees may apply | https://eprovide.mapi-trust.org/instruments/sleep-disturbance-numerical… | Nil | None identified in March 2025 | None identified in March 2025 | |
| Skin | Eczema | Hand Eczema Symptom Diary | HESD | USA; Canada; Denmark; The Netherlands; UK | 2024 | To assess signs and symptoms of chronic hand eczema. | 6 | No specific domains/dimensions identified | Yes | Grant L, Seiding Larsen L, Burrows K, Belsito DV, Weisshaar E, Diepgen T, Hahn-Pedersen J, Sørensen OE, Arbuckle R. Development of a Conceptual Model of Chronic Hand Eczema (CHE) Based on Qualitative Interviews with Patients and Expert Dermatologists. Adv Ther. 2020 Feb;37(2):692-706. See also: Molin S, Larsen LS, Joensson P, Oesterdal ML, Arbuckle R, Grant L, Skingley G, Schuttelaar ML. Development and Psychometric Validation of a Patient-Reported Outcome Measure to Assess the Signs and Symptoms of Chronic Hand Eczema: The Hand Eczema Symptom Diary (HESD). Dermatology and therapy. 2024 Mar;14(3):643-69. | No information | Unknown | Sonja Molin, s.molin@queensu.ca | Nil | None identified in March 2025 | None identified in March 2025 | |
| Skin | Eczema | Patient-Oriented Eczema Measure | POEM | UK | 2004 | To monitor disease activity in children and adults with atopic eczema. | 7 | No specific domains/dimensions identified | Yes | Charman CR, Venn AJ, Williams HC. The patient-oriented eczema measure: development and initial validation of a new tool for measuring atopic eczema severity from the patients’ perspective. Archives of dermatology. 2004 Dec 1;140(12):1513-9. | Yes | Unknown | https://www.nottingham.ac.uk/research/groups/cebd/resources/poem.aspx | https://healthcaredelivery.cancer.gov/pro-ctcae/instrument-ped.html | Yes | Schmitt J, Langan S, Deckert S, Svensson A, von Kobyletzki L, Thomas K, Spuls P. Assessment of clinical signs of atopic dermatitis: a systematic review and recommendation. Journal of Allergy and Clinical Immunology. 2013 Dec 1;132(6):1337-47. Gerbens LA, Prinsen CA, Chalmers JR, Drucker AM, Von Kobyletzki LB, Limpens J, Nankervis H, Svensson Å, Terwee CB, Zhang J, Apfelbacher CJ. Evaluation of the measurement properties of symptom measurement instruments for atopic eczema: a systematic review. Allergy. 2017 Jan;72(1):146-63. |
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| Skin | Pressure ulcer | Pressure Ulcer Quality Of Life | PU-QOL | UK | 2013 | To capture health-related quality of life outcomes important to people with pressure ulcers. | 81 | 4 | Symptoms (Pain, Exudate, Odour, Itchiness); Physical Functioning (Sleep, Movement & Mobility, Daily Activities, Vitality); Psychological Well-being (Emotional, Self-consciousness and appearance); Social Participation | Yes | Gorecki C, Lamping DL, Brown JM, Madill A, Firth J, Nixon J. Development of a conceptual framework of health-related quality of life in pressure ulcers: a patient-focused approach. Int J Nurs Stud. 2010 Dec;47(12):1525-34 Gorecki C, Brown JM, Cano S, Lamping DL, Briggs M, Coleman S, Dealey C, McGinnis E, Nelson AE, Stubbs N, Wilson L. Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument. Health and quality of life outcomes. 2013 Dec;11:1-2 |
Yes | Unknown | https://ctru.leeds.ac.uk/wp-content/uploads/2019/01/PUQOL-questionnaire-v1_Final_May2013.pdf | Yes | van Alphen TC, Ter Brugge F, van Haren EL, Hoogbergen MM, Rakhorst H. SCI-QOL and WOUND-Q have the best patient-reported outcome measure design: a systematic literature review of PROMs used in chronic wounds. Plastic and Reconstructive Surgery–Global Open. 2023 Jan 1;11(1):e4723 Gorecki C, Nixon J, Lamping DL, Alavi Y, Brown JM. Patient-reported outcome measures for chronic wounds with particular reference to pressure ulcer research: a systematic review. International Journal of Nursing Studies. 2014 Jan 1;51(1):157-65. |
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| Skin | Skin, general | Dermatology Life Quality Index | DLQI | UK | 1994 | To measure the Quality of Life of dermatology patients and to be used as an outcome measure in health services research. | 10 | No specific domains/dimensions identified | Yes | Finlay AY, Khan G. Dermatology Life Quality Index (DLQI)—a simple practical measure for routine clinical use. Clinical and experimental dermatology. 1994 May;19(3):210-6. Basra MK, Fenech R, Gatt RM, Salek MS, Finlay AY. The Dermatology Life Quality Index 1994–2007: a comprehensive review of validation data and clinical results. British Journal of Dermatology. 2008 Nov 1;159(5):997-1035. |
Yes | Unknown | https://www.cardiff.ac.uk/medicine/resources/quality-of-life-questionna… | https://www.cardiff.ac.uk/medicine/resources/quality-of-life-questionna… | Yes | Legemate CM, Spronk I, Mokkink LB, Middelkoop E, Polinder S, van Baar ME, van der Vlies CH. Evaluation of measurement properties of health-related quality of life instruments for burns: A systematic review. Journal of trauma and acute care surgery. 2020 Apr 1;88(4):555-71. Gabes M, Tischer C, Apfelbacher C, Quality of Life working group of the Harmonising Outcome Measures for Eczema (HOME) initiative. Measurement properties of quality‐of‐life outcome measures for children and adults with eczema: an updated systematic review. Pediatric allergy and immunology. 2020 Jan;31(1):66-77. |
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| Skin | Skin, general | Skindex | Skindex-29 | USA | 1997 | To measure the effects of skin disease on a patient's quality of life. | 29 | 3 | Symptom; Function; Emotion | Yes | Chren MM, Lasek RJ, Flocke SA, Zyzanski SJ. Improved discriminative and evaluative capability of a refined version of Skindex, a quality-of-life instrument for patients with skin diseases. Archives of dermatology. 1997 Nov 1;133(11):1433-40. Chren MM, Lasek RJ, Quinn LM, Covinsky KE. Convergent and discriminant validity of a generic and a disease-specific instrument to measure quality of life in patients with skin disease. Journal of investigative dermatology. 1997 Jan 1;108(1):103-7. Chren MM, Lasek RJ, Quinn LM, Mostow EN, Zyzanski SJ. Skindex, a quality-of-life measure for patients with skin disease: reliability, validity, and responsiveness. Journal of investigative Dermatology. 1996 Nov 1;107(5):707-13. |
Yes | Yes, fees may apply | https://eprovide.mapi-trust.org/instruments/skindex | Nil | Yes | Eiger B, Errebo M, Straszek CL, Vaegter HB. Less is more: reliability and measurement error for three versions of the Tampa Scale of Kinesiophobia (TSK-11, TSK-13, and TSK-17) in patients with high-impact chronic pain. Scandinavian journal of pain. 2023 Jan 27;23(1):217-24. Dupuis F, Cherif A, Batcho C, Massé-Alarie H, Roy JS. The Tampa scale of kinesiophobia: A systematic review of its psychometric properties in people with musculoskeletal pain. The Clinical journal of pain. 2023 May 1;39(5):236-47 |
| Skin | Skin, Quality of life | Teenage Quality of Life Index | T-QoL | UK | 2019 | To measure the impact of skin disease on adolescent quality of life. | 18 | 3 | Self image; Physical wellbeing and future aspirations; Psychosocial impact and relationships | Yes | Basra MKA, Salek MS, Fenech D, Finlay AY. Conceptualization, development and validation of T-QoL© (Teenagers’ Quality of Life): a patient-focused measure to assess quality of life of adolescents with skin diseases. British Journal of Dermatology 2018; 178: 161-175. | Yes | Yes, fees may apply | https://www.cardiff.ac.uk/medicine/resources/quality-of-life-questionna… | https://www.cardiff.ac.uk/medicine/resources/quality-of-life-questionnaires/teenagers-quality-of-life | None identified in March 2025 | None identified in March 2025 |
| Skin | Skin; Quality of life | Dermatology Quality Of Life Scales | DQOLS | UK | 1997 | To assess the impact of skin conditions on patients’ psychosocial state and everyday activities. | 29 | 2 | Psychosocial (4 sub-scales: Embarrassment, Despair, Irritableness, Distress); Activities (4 sub-scales: Everyday, Summer, Social, Sexual) | Yes | Morgan M, McCreedy R, Simpson J, Hay RJ. Dermatology quality of life scales–a measure of the impact of skin diseases. British Journal of Dermatology. 1997 Feb 1;136(2):202-6. | Yes | Unknown | Morgan RJ Hay | Nil | Yes | Pérez-Chada LM, Hopkins ZH, Balak DM, Rashid S, Creadore A, Chu B, Villa C, Woodbury MJ, Armstrong AW, Strand V, Gottlieb AB. Patient-reported outcome measures for health-related quality of life in patients with psoriasis: a systematic review. JAMA dermatology. 2024 Mar 20. Pattinson RL, Trialonis-Suthakharan N, Gupta S, Henry AL, Lavallée JF, Otten M, Pickles T, Courtier N, Austin J, Janus C, Augustin M. Patient-reported outcome measures in dermatology: a systematic review. Acta Dermato-Venereologica. 2021;101(9). |
| Skin | Skin; Quality of life | Dermatology-Specific Quality of Life instrument | DSQL | USA | 1997 | To assess the effects of skin disease on physical discomfort and symptoms, psychologic well-being, social functioning, self-care activities, performance at work or school, and self-perceptions. | 44 | 5 | Physical symptoms; Activities of daily living; Social; Work/School; Self perception | Yes | Anderson RT, Rajagopalan R. Development and validation of a quality of life instrument for cutaneous diseases. Journal of the American Academy of Dermatology. 1997 Jul 1;37(1):41-50. Anderson R, Rajagopalan R. Responsiveness of the Dermatology-specific Quality of Life (DSQL) instrument to treatment for acne vulgaris in a placebo-controlled clinical trial. Quality of Life Research. 1998 Dec;7:723-34. |
Yes | Unknown | Roger T. Anderson, Department of Public Health Sciences, The Wake Forest University School of Medicine, Winston-Salem, NC, USA | Nil | None identified in March 2025 | None identified in March 2025 |