List of generic PROMs

Group     Condition Name Abbreviated Country developed Year validated Short summary Domains/dimensions Self-report or other Validation Reference of the original validation papers Licensing or restrictions on use? Fees apply? Weblink/Contact details for authors for licensing information Published papers using the measure Published reports using the measure Other
Generic   Activity Measure Post-Acute Care AM-PAC USA 2004 The AM-PAC assesses limitations based on the World Health Organisation's International Classification of Functioning, Disability and Health (ICF). Various separate versions of the AM-PAC have been developed, including the Outpatient Short form, Inpatient “6-Clicks” Short Form, Home Care Short Form and Surgical Short Form. 3: Applied cognition, personal care & instrumental activities, and physical & movement activities Self-report Confirmatory factor analysis and internal consistency reliability have been demonstrated. Haley, S. M., Coster, W. J., Andres, P. L., Ludlow, L. H., Ni, P., Bond, T. L., ... & Jette, A. M. (2004). Activity outcome measurement for postacute care. Medical Care, I49-I61. doi: 10.1097/01.mlr.0000103520.43902.6c Yes Yes, fees may apply…, Jette, D. U., Stilphen, M., Ranganathan, V. K., Passek, S. D., Frost, F. S., & Jette, A. M. (2014). AM-PAC “6-Clicks” functional assessment scores predict acute care hospital discharge destination. Physical therapy, 94(9), 1252-1261. None identified in June 2019 The tools have been translated into over 20 languages.
Generic Pain Brief Pain Inventory BPI USA 1994 A measure evaluating severity of a patient's pain and the impact this pain has on their daily functioning. Patient's rate their: worst, least, average and current pain intensity, detail current treatments and their perceived effectiveness. Also rate how much pain impacts on e.g., general activity, normal work. Available in a short and long form. Used in a range of conditions including musculoskeletal and cancer. 2: Pain severity, pain interference Self-report Factor analysis, test-retest, and alternate-forms reliability have been demonstrated. Cleeland, C. S., & Ryan, K. M. (1994). Pain assessment: global use of the Brief Pain Inventory. Annals, Academy of Medicine, Singapore.… Yes Yes, fees may apply… Schaefer, C., Sadosky, A., Mann, R., Daniel, S., Parsons, B., Tuchman, M., ... & Nieshoff, E. (2014). Pain severity and the economic burden of neuropathic pain in the United States: BEAT Neuropathic Pain Observational Study. ClinicoEconomics and outcomes research: CEOR, 6, 483. doi: 10.2147/CEOR.S63323 Patient outcomes in pain management (2016-17):…  
Generic Mental wellbeing Brief Symptom Inventory BSI USA 1983 The BSI was developed from its longer parent instrument, the SCL-90-R. More recently, the BSI-18 has been developed; a brief 18 item-screening inventory designed to screen for psychiatric disorder in medical and community populations. 9: Somatization, obsession-compulsion, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation and psychoticism, and three global indices of distress: Global severity index, positive symptom distress index, and positive symptom total Self-report, interviewer Factor analysis, internal consistency, test-retest reliability, construct validity and criterion validity have been demonstrated. Derogatis, L. R., & Melisaratos, N. (1983). The brief symptom inventory: an introductory report. Psychological medicine, 13(3), 595-605. Yes Yes, fees may apply Budinger, M. C., Drazdowski, T. K., & Ginsburg, G. S. (2013). Anxiety-promoting parenting behaviors: A comparison of anxious parents with and without social anxiety disorder. Child Psychiatry & Human Development, 44(3), 412-418. doi: 10.2975/35.4.2012.345.348 None identified in June 2019 The BSI has been translated into several languages, including Spanish, French and Italian.
Generic   Canadian Health Care Evaluation Project Questionnaire CANHELP Canada 2010 Measures satisfaction with end-of-life care and can be used by both patients and their family members. A measure of satisfaction that can be used to rate the quality of care at the programs or organization level. The patient version has 38 items and the caregiver version has 40 items. 6: Relationship with doctors, illness management, communication, decision-making, role of the family, and your well-being Self-report Exploratory factor analysis, internal consistency reliability, and construct validity have been demonstrated. Heyland, D. K., Cook, D. J., Rocker, G. M., Dodek, P. M., Kutsogiannis, D. J., Skrobik, Y., ... & Canadian Researchers at the End of Life Network (CARENET). (2010). The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: the Canadian Health Care Evaluation Project (CANHELP) Questionnaire. Palliative Medicine, 24(7), 682-695. doi: Unknown Unknown Contact: Daren Heyland, Heyland, D. K., Barwich, D., Pichora, D., Dodek, P., Lamontagne, F., You, J. J., ... & ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team. (2013). Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA internal medicine, 173(9), 778-787. doi:10.1001/jamainternmed.2013.180 None identified in June 2019 Simultaneously validated in French. Can be used by family members as well as patients.
Generic   Child Health And Illness Profile CHIP USA 1995 A long survey (107 items +) measuring child and adolescent health status. 6 with multiple subdomains: Discomfort, disorders, satisfaction with health, achievement (of age-appropriate social roles), risks, and resilience Self-report, parent proxy Confirmatory factor analysis and test-retest reliability have been demonstrated. Starfield, B., Riley, A. W., Green, B. F., Ensminger, M. E., Ryan, S. A., Kelleher, K., ... & Vogel, K. (1995). The adolescent child health and illness profile: a population-based measure of health. Medical care, 553-566. URL: Starfield, B., Ensminger, M., Riley, A., McGauhey, P., Skinner, A., Kim, S., ... & Green, B. (1993). Adolescent health status measurement: development of the Child Health and Illness Profile. Pediatrics, 91(2), 430-435. URL… Unknown Unknown Contact: Dr. Barbara Starfield Seid, M., Yu, H., Lotstein, D., & Varni, J. W. (2005). Using health-related quality of life to predict and manage pediatric healthcare. Expert review of pharmacoeconomics & outcomes research, 5(4), 489-498. None identified in June 2019 Available as a proxy measure for parents to fill in about their younger children (i.e., 6-11 years). Validated in Spanish and other languages. Only parent version was found online:…
Generic   Decision Regret Scale DRS Canada 2003 A 5 item scale, it measures regret following a health care decisions. Initially validated with those receiving hormone replacement therapy, breast cancer adjuvant therapy, breast cancer surgery and prostate cancer treatment. Unidimensional Self-report Convergent validity has been demonstrated. Brehaut, J. C., O'Connor, A. M., Wood, T. J., Hack, T. F., Siminoff, L., Gordon, E., & Feldman-Stewart, D. (2003). Validation of a decision regret scale. Medical decision making, 23(4), 281-292. doi: 10.1177/0272989X03256005 Yes No… Nicolai, J., Buchholz, A., Seefried, N., Reuter, K., Härter, M., Eich, W., & Bieber, C. (2016). When do cancer patients regret their treatment decision? A path analysis of the influence of clinicians’ communication styles and the match of decision-making styles on decision regret. Patient education and counseling, 99(5), 739-746. doi: None identified in June 2019 Available in French, Chinese and other languages.
Generic   European Quality Of Life-5 Dimensions EQ-5D Europe: Denmark, England, Italy, the Netherlands, Poland, and Scotland 1990 An extensively-used, brief (5 item) survey of health status suitable for health in general and widely used for specific conditions. Some modifications have occurred over the years. It is now in it's third version: EQ-5D-5L. Also available in a "youth" version. 5: Mobility, self care, usual activities, pain/discomfort, anxiety/depression Self-report Reliability, validity and responsiveness has been demonstrated with adequate validation across various papers. Janssen, M. F., Pickard, A. S., Golicki, D., Gudex, C., Niewada, M., Scalone, L., ... & Busschbach, J. (2013). Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L across eight patient groups: a multi-country study. Quality of Life Research, 22(7), 1717-1727. doi: 10.1007/s11136-012-0322-4 Yes Yes, fees may apply Licensing fees are determined by the EuroQol Office based on the user information provided in the registration form. If applicable, the size of the license fee depends on the type of study, funding source, sample size and number of requested EQ-5D versions and languages. You are not obliged to purchase the EQ-5D by registering. The EQ-5D user license policy is available on the EuroQol website. Titov, N., Dear, B. F., Ali, S., Zou, J. B., Lorian, C. N., Johnston, L., ... & Fogliati, V. J. (2015). Clinical and cost-effectiveness of therapist-guided internet-delivered cognitive behavior therapy for older adults with symptoms of depression: a randomized controlled trial. Behavior therapy, 46(2), 193-205. Australian National Diabetes Information Audit and Benchmarking - Quality assurance of patient practices and diabetes centre care (2010):… Available in numerous languages and with international data for benchmarking, comparison and calculating QALYs.
Generic Chronic conditions Functional Assessment Of Chronic Illness Therapy Measurement System FACIT USA 1987 The Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System is a collection of health-related quality of life (HRQOL) questionnaires targeted to the management of chronic illness. The measurement system began with the creation of a generic CORE questionnaire called the Functional Assessment of Cancer Therapy-General (FACT-G). FACT-G (4 primary quality of life domains): Physical well-being, social/family well-being, emotional well-being, and functional well-being. Self-report Rasch modelling, factor analysis, internal consistency, test-retest reliability, and responsiveness to change have been demonstrated. Cella, D. F., Tulsky, D. S., Gray, G., Sarafian, B., Linn, E., Bonomi, A., ... & Eckberg, K. (1993). The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol, 11(3), 570-579.… Yes No Teckle, P., McTaggart-Cowan, H., Van der Hoek, K., Chia, S., Melosky, B., Gelmon, K., & Peacock, S. (2013). Mapping the FACT-G cancer-specific quality of life instrument to the EQ-5D and SF-6D. Health and Quality of life Outcomes, 11(1), 203. None identified in June 2019  
Generic   Healthy Pathways Child-Report Scales   USA 2010 A self-report measure of child health status. It was modified from the CHIP but uses more contemporary methods to develop the instrument. Validation was found for 16 of 17 CHIP subscales, thereby making them the basis for potential computerised adaptive testing in the future. 17: Physical comfort, emotional comfort, negative stress reaction, physical activity, balanced nutrition, vitality, peer connectedness, family connectedness, teacher connectedness, active coping, aggression/bullying, peer hostility/bully victim, life satisfaction, self-worth, body image, academic performance, school engagement Self-report Confirmatory factor analysis, discriminative validity, and internal consistency reliability have been demonstrated. Bevans, K. B., Riley, A. W., & Forrest, C. B. (2010). Development of the healthy pathways child-report scales. Quality of Life Research, 19(8), 1195-1214. doi: 10.1007/s11136-010-9687-4 Unknown Unknown Contact: None identified in June 2019 None identified in June 2019  
Generic Mental wellbeing Hospital Anxiety And Depression Score HADS UK 1983 A quick and simple measure used to identify possible and probable cases of anxiety disorders and depression among patients in non-psychiatric hospitals. 2: Depression, anxiety Self-report Principal component analysis and internal consistency have been demonstrated. Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta psychiatrica scandinavica, 67(6), 361-370.… Further English validation papers: Moorey, S., Greer, S., Watson, M., Gorman, C., Rowden, L., Tunmore, R., ... & Bliss, J. (1991). The factor structure and factor stability of the hospital anxiety and depression scale in patients with cancer. The British Journal of Psychiatry, 158(2), 255-259.… Yes Yes, fees may apply… Matthey, S., & Ross-Hamid, C. (2012). Repeat testing on the Edinburgh Depression Scale and the HADS-A in pregnancy: differentiating between transient and enduring distress. Journal of affective disorders, 141(2-3), 213-221. Targeted research in depression, anxiety and related disorders (2007-10): Available in numerous languages including German, Dutch and French.
Generic   International Pain Outcomes IPO Europe: France, Germany, Italy, Romania, Spain, Sweden, Switzerland, United Kingdom, plus Israel 2013 A measure of post-operative pain management. The IPO questionnaire covers pain-relevant aspects like demographics, comorbidities, pre- and postoperative pain, psychological aspects, and pain treatment. 3: Pain intensity and interference, adverse effects, perceptions of care Self-report Principal component analysis, discriminant validity, and internal consistency reliability have been demonstrated. Rothaug, J., Zaslansky, R., Schwenkglenks, M., Komann, M., Allvin, R., Backström, R., ... & Fodor, L. (2013). Patients' perception of postoperative pain management: validation of the International Pain Outcomes (IPO) questionnaire. The Journal of Pain, 14(11), 1361-1370. doi: Unknown Unknown Contact: Judith Rothaug, and see Zaslansky, R., Rothaug, J., Chapman, R. C., Backström, R., Brill, S., Engel, C., ... & Komann, M. (2014). PAIN OUT: an international acute pain registry supporting clinicians in decision making and in quality improvement activities. Journal of evaluation in clinical practice, 20(6), 1090-1098. doi: 10.1111/jep.12205 Final Report Summary - PAIN-OUT (Improvement in postoperative pain outcome) (2012):  
Generic   KIDSCREEN   Europe: Austria, Switzerland, Czech Republic, Germany, Greece, Spain, France, Hungary, The Netherlands, Poland, Sweden, the UK 2005 A generic measure of health-related quality-of-life for children and adolescents, it assesses the frequency of behaviours/feelings, or less frequently, the intensity of an attitude. It is available in long (52 items i.e., KIDSCREEN-52) and short forms. 10: Physical wellbeing, psychological wellbeing, moods and emotions, self-perceptions, autonomy, parent relation and home life, social support and peers, school environment, social acceptance (bullying), financial resources Self-report, parent proxy Confirmatory factor analysis and internal consistency reliability have been demonstrated. Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., ... & Mazur, J. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert review of pharmacoeconomics & outcomes research, 5(3), 353-364. doi: 10.1586/14737167.5.3.353 Yes Yes, fees may apply… None identified in June 2019 Description of the KIDSCREEN instruments (2004):… Validated in numerous languages.
Generic   KINDL-R   Germany 1998 A 40 item measure of health-related quality of life in children and adolescents, it was originally developed in German, but has undergone some validity and reliability testing among English-speaking Asian populations. Different versions are available for different age ranges. Additionally modules access quality of life for children with chronic diseases 6: Physical well-being, emotional wellbeing, self-esteem, family, friends, and everyday functioning Self-report, parent proxy Convergent validity and internal consistency have been demonstrated. Ravens-Sieberer, U., & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Quality of life research, 7(5), 399-407. Wee, H. L., Lee, W. W. R., Ravens-Sieberer, U., Erhart, M., & Li, S. C. (2005). Validation of the English version of the KINDL® generic children’s health-related quality of life instrument for an Asian population–results from a pilot test. Quality of life research, 14(4), 1193-1200. doi: 10.1007/s11136-004-2957-2 Wee, H. L., Ravens-Sieberer, U., Erhart, M., & Li, S. C. (2007). Factor structure of the Singapore English version of the KINDL® children quality of life questionnaire. Health and Quality of Life Outcomes, 5(1), 4. Yes Yes, fees may apply Serra-Sutton, V., Ferrer, M., Rajmil, L., Tebé, C., Simeoni, M. C., & Ravens-Sieberer, U. (2009). Population norms and cut-off-points for suboptimal health related quality of life in two generic measures for adolescents: the Spanish VSP-A and KINDL-R. Health and quality of life outcomes, 7(1), 35. Assessment tool used by iCare NSW for assessment of children with injury for care planning:… Available in multiple languages including German, Spanish, Serbian, Dutch.
Generic   Late-Life Function And Disability Instrument LLFDI USA 2002 A measure evaluating physical functioning and disability particularly in later life. The disability (16 items) and physical functioning (32 items) components can be administered separately. Disability 2: Frequency (social role, personal role), limitation (instrumental role, management role), Function: Unidimensional (advanced lower extremity functioning, basic lower extremity functioning, and upper extremity functioning) Self-report Exploratory factor analysis, concurrent and predictive validity, and test-retest reliability have been demonstrated. Jette, A. M., Haley, S. M., Coster, W. J., Kooyoomjian, J. T., Levenson, S., Heeren, T., & Ashba, J. (2002). Late life function and disability instrument: I. Development and evaluation of the disability component. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 57(4), M209-M216. ; Haley, S. M., Jette, A. M., Coster, W. J., Kooyoomjian, J. T., Levenson, S., Heeren, T., & Ashba, J. (2002). Late Life Function and Disability Instrument: II. Development and evaluation of the function component. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 57(4), M217-M222. Yes Unknown Contact: Stephen Haley, LaPier, T. K. (2012). Utility of the late life function and disability instrument as an outcome measure in patients participating in outpatient cardiac rehabilitation: a preliminary study. Physiotherapy Canada, 64(1), 53-62. doi: 10.3138/ptc.2010-30 Environmental and built factors for maintaining independence in older age (2011):… Available in multiple languages and a CAT form.
Generic   Living With Medicines Questionnaire LMQ UK 2017 This survey measures patients' sense of medicine-related burden. LMQ Version 3 (LMQ-3) has 41 items. 8: Patient–doctor relationships and communication about medicines, patient–pharmacist communication about medicines, interferences with daily life, practical difficulties, effectiveness, acceptance of medicine use, autonomy/control over medicines, concerns about medicine use Self-report Principal component analysis and internal consistency have been demonstrated. Krska, J., Katusiime, B., & Corlett, S. A. (2017). Validation of an instrument to measure patients’ experiences of medicine use: the Living with Medicines Questionnaire. Patient preference and adherence, 11, 671. doi: 10.2147/PPA.S126647 Yes Yes, fees may apply Wuyts, J., Maesschalck, J., De Wulf, I., Foubert, K., Boussery, K., De Lepeleire, J., & Foulon, V. (2018). Studying the impact of a medication use evaluation for polymedicated older patients by the community pharmacist (SIMENON): study protocol. BMC health services research, 18(1), 623. None identified in June 2019  
Generic   Long-Term Conditions Questionnaire LTCQ UK 2017 This measure captures outcomes among people with one or more chronic physical or mental health conditions. Potentially suitable for use in both health and social care settings. Unidimensional Self-report Exploratory factor analysis, construct validity, internal consistency, and test-retest reliability have been demonstrated. Potter, C. M., Batchelder, L., Geneen, L., Kelly, L., Fox, D., Baker, M., ... & Gibbons, E. (2017). Long-Term Conditions Questionnaire (LTCQ): initial validation survey among primary care patients and social care recipients in England. BMJ open, 7(11), e019235. Unknown Unknown Contact: Dr Caroline M Potter, None identified in June 2019 The development of a PROM for long term conditions:… A new instrument, evidence for use is accumulating in the Oxford CLAHRC, UK.
Generic Pain McGill Pain Questionnaire MPQ Canada 1975 A popular measure of pain which uses 78 words (sensory, affective, and evaluative); patients rate their level of intensity for each. The questionnaire also includes an overall pain intensity rating and a draw so that patient can indicate where on the body their pain is present. Originally tested with a range of different types of pain (e.g., menstrual, cancer, arthritis). It is available in a number of short forms and different scoring strategies are possible. 4 subscales (sensory, affective, evaluative, miscellaneous): Sensory - flickering/beating, jumping/shooting, pricking/lancinating, sharp/lacerating, pinching/crushing, tugging/wrenching, hot/searing, tingling/stinging, dull/heavy, tender/splitting; Affective - tiring/exhausting, sickening/suffocating, fearful/terrifying, punishing/killing, wretched/blinding; Evaluative - annoying/unbearable; Miscellaneous - spreading/piercing, tight/tearing, cold/freezing, nagging/torturing Self-report Originally just sensitivity examined, short-form has been validated using construct and discriminant validity, confirmatory factor analysis, internal consistency reliability Melzack, R. (1975). The McGill Pain Questionnaire: major properties and scoring methods. Pain, 1(3), 277-299.
See also: Dworkin, R. H., Turk, D. C., Revicki, D. A., Harding, G., Coyne, K. S., Peirce-Sandner, S., ... & Farrar, J. T. (2009). Development and initial validation of an expanded and revised version of the Short-form McGill Pain Questionnaire (SF-MPQ-2). PAIN®, 144(1-2), 35-42. doi: 10.1016/j.pain.2009.02.007
Wright, K. D., Asmundson, G. J., & McCreary, D. R. (2001). Factorial validity of the short‐form McGill pain questionnaire (SF‐MPQ). European Journal of Pain, 5(3), 279-284. doi: 10.1053/eujp.2001.0243
Yes Unknown Contact: Melzack, administered by Onieva-Zafra, M. D., Castro-Sánchez, A. M., Matarán-Peñarrocha, G. A., & Moreno-Lorenzo, C. (2013). Effect of music as nursing intervention for people diagnosed with fibromyalgia. Pain Management Nursing, 14(2), e39-e46. None identified in June 2019 Available in Arabic, German, Japanese and numerous other languages.
Generic   Nottingham Health Profile NHP UK 1981/1985 A simple yes/no measure of subjective health status consisting of 38 items including on social, physical and emotional. An individual reads a number of statements a select whether they apply to them. 6: Physical ability, energy, pain, sleep, social isolation, emotional reaction Self-report Criterion validity and test-retest reliability have been demonstrated. Hunt, S. M., McKenna, S. P., McEwen, J., Williams, J., & Papp, E. (1981). The Nottingham Health Profile: subjective health status and medical consultations. Social Science & Medicine. Part A: Medical Psychology & Medical Sociology, 15(3), 221-229. Hunt, S. M., McEwen, J., & McKenna, S. P. (1985). Measuring health status: a new tool for clinicians and epidemiologists. JR Coll Gen Pract, 35(273), 185-188. Yes Yes, fees may apply Gross, T., Schüepp, M., Attenberger, C., Pargger, H., & Amsler, F. (2012). Outcome in polytraumatized patients with and without brain injury. Acta Anaesthesiologica Scandinavica, 56(9), 1163-1174. doi: 10.1111/j.1399-6576.2012.02724.x Measuring Health - A step in the development of city health profiles (1995):  
Generic   Over The Counter Medication Impact Scale OTC-MIS USA 2014 This 8 item measure assesses the impact of over the counter medication use on patients' health-related quality of life. Unidimensional Self-report Exploratory factor analysis, construct and criterion validity, and internal consistency have been demonstrated. Mhatre, S. K., & Sansgiry, S. S. (2014). Impact of Over-the-Counter Medication Use on Patients’ Health-Related Quality of Life: Development and Psychometric Validation of Over-the-Counter Medication Impact Scale. Clinical drug investigation, 34(4), 277-286. Unknown Unknown Contact: Shivani K Mhatre, None identified in June 2019 None identified in June 2019  
Generic   Oxford Participation And Activities Questionnaire Ox-PAQ UK 2016 Theoretically grounded in the World Health Organization’s International Classification of Functioning, Disability, and Health (ICF), this 23 item instrument measures activity and participation among those with chronic diseases. 3: Routine activities, emotional wellbeing, social engagement Self-report Principal component analysis, concurrent and known groups validity, internal consistency, and test-retest reliability have been demonstrated. Morley, D., Dummett, S., Kelly, L., Dawson, J., Fitzpatrick, R., & Jenkinson, C. (2016). Validation of the Oxford participation and activities questionnaire. Patient related outcome measures, 7, 73. doi: 10.2147/PROM.S96822. Siegert, R. J., Gao, W., Walkey, F. H., & Higginson, I. J. (2010). Psychological well-being and quality of care: a factor-analytic examination of the palliative care outcome scale. Journal of pain and symptom management, 40(1), 67-74. Yes Yes, fees may apply… Morley, D., Dummett, S., Kelly, L., Fitzpatrick, R., & Jenkinson, C. (2018). Predictors of activity and participation across neurodegenerative conditions: a comparison of people with motor neurone disease, multiple sclerosis and Parkinson’s disease. BMC neurology, 18(1), 19. None identified in June 2019  
Generic   Palliative Care Outcome Scale POS UK 1999 A 10 item measure for those receiving palliative care which involves a more holistic focus across physical, psychological, or spiritual domains. Originally developed for advanced cancer patients, but has also been used for e.g., patients with multiple sclerosis. Currently being superseded by the Integrated POS, however, validation is still ongoing for this new instrument. Originally developed as 10 single items reflecting important aspects of palliative care; Subsequent EFA/CFA identified 2: Psychological wellbeing, perceived quality of palliative care received Self-report, staff proxy Construct validity, criterion validity, test-retest and internal consistency reliability have been demonstrated. Hearn, J., & Higginson, I. J. (1999). Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. BMJ Quality & Safety, 8(4), 219-227. Yes No Edmonds, P., Hart, S., Gao, W., Vivat, B., Burman, R., Silber, E., & Higginson, I. J. (2010). Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service. Multiple Sclerosis Journal, 16(5), 627-636. doi: 10.1177/1352458510364632 None identified in June 2019 Validated in numerous languages. Website has extensive resources and details about the different versions.
Generic   Patient Activation Measure PAM USA 2004 A measure of patient engagement including knowledge, skill, and confidence for self‐management. It is available in a 22 item and a shorter version. Unidimensional Self-report Criterion validity, Rasch analysis, and test-retest reliability have been demonstrated. Hibbard, J. H., Stockard, J., Mahoney, E. R., & Tusler, M. (2004). Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health services research, 39(4p1), 1005-1026. Yes Yes, fees may apply Greene, J., Hibbard, J. H., Sacks, R., Overton, V., & Parrotta, C. D. (2015). When patient activation levels change, health outcomes and costs change, too. Health Affairs, 34(3), 431-437. Independent evaluation of the feasibility of using the Patient Activation Measure in the NHS in England (2017):…  
Generic   Patient Assessment Of Chronic Illness Care PACIC USA 2005 A 20 item measure assess the extent to which patients receive care in line with the Chronic Care Model. Also available in a shorter and longer form and different versions for different populations e.g., older persons. 5: Patient activation, delivery system design/decision support, goal setting/tailoring, problem-solving/contextual, follow-up/coordination Self-report Confirmatory factor analysis, convergent validity, test-retest and internal consistency reliability have been demonstrated. Glasgow, R. E., Wagner, E. H., Schaefer, J., Mahoney, L. D., Reid, R. J., & Greene, S. M. (2005). Development and validation of the patient assessment of chronic illness care (PACIC). Medical care, 436-444. Yes Yes, fees may apply Aung, E., Ostini, R., Dower, J., Donald, M., Coll, J. R., Williams, G. M., & Doi, S. A. (2016). Patient assessment of chronic illness care (PACIC) in type 2 diabetes: a longitudinal study. Evaluation & the health professions, 39(2), 185-203. None identified in June 2019 Validated in Australia for diabetes care.
Generic   Patient Experience With Treatment And Self-Management PETS USA 2017 A comprehensive patient-reported measure of treatment burden i.e., the personal workload of healthcare, including treatment and self-management of chronic health conditions.  9: Medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, physical/mental exhaustion Self-report Confirmatory factor analysis was used for validation. Eton, D. T., Yost, K. J., Lai, J. S., Ridgeway, J. L., Egginton, J. S., Rosedahl, J. K., ... & Odell, L. (2017). Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden. Quality of Life Research, 26(2), 489-503. Unknown Unknown Contact: Eton David, Song, M. K., Paul, S., Plantinga, L., Henry, C., & Turberville-Trujillo, L. (2019). Social Networks of Self-Care and Perceived Treatment Burden Among Patients on In-Center Hemodialysis. Kidney Medicine. None identified in June 2019  
Generic   Patient Generated Index PGI UK 1994 A flexible and individualised measure of health-related quality of life, allowing patients to generate their own impacts and priorities. It asks patients to nominate the 5 most important areas where their condition has affected them, then rate how badly affected they have been in these areas. Finally patients distribute 60 points according to the extent they would try to improve one or all of those areas. By multiplying each rating by the proportion of points allocated and summing a 0-100 index is created. Unidimensional Self-report Criterion and construct validity, and test-retest reliability have been demonstrated. Ruta, D. A., Garratt, A. M., Leng, M., Russell, I. T., & MacDonald, L. M. (1994). A new approach to the measurement of quality of life: the Patient-Generated Index. Medical care, 1109-1126. Unknown Unknown Ala’S, A., Gagnon, B., Rodríguez, A. M., & Mayo, N. E. (2016). Using a personalized measure (Patient Generated Index (PGI)) to identify what matters to people with cancer. Supportive Care in Cancer, 24(1), 437-445. None identified in June 2019  
Generic   Patient Perception Of Integrated Care PPIC USA 2012 A measure of the integration of care received by chronically ill patients. 6: Information flow to your doctor, information flow to your specialist, information flow to other providers in your doctor’s office, coordination with home and community resources, post visit information flow to the patient, patient centeredness Self-report Exploratory factor analysis, discriminant validity, and internal consistency have been demonstrated. Singer, S. J., Friedberg, M. W., Kiang, M. V., Dunn, T., & Kuhn, D. M. (2013). Development and preliminary validation of the patient perceptions of integrated care survey. Medical Care Research and Review, 70(2), 143-164. Unknown Unknown, Mohr, D. C., Benzer, J. K., Vimalananda, V. G., Singer, S. J., Meterko, M., McIntosh, N., ... & Charns, M. P. (2019). Organizational coordination and patient experiences of specialty care integration. Journal of general internal medicine, 1-7. doi: 10.1007/s11606-019-04973-0 None identified in June 2019 Available in Spanish.
Generic   Patient-Reported Outcome Measurement Information System PROMIS USA 2010 Overseen by the National Institute of Health (NIH), PROMIS includes a suite of item banks relevant across a range of common medical conditions. It therefore includes both generic, and symptom and disease-specific, PROM item banks (>300 for adults and paediatric populations). Item selection relies on item-response theory, where new items are selected based on previous responses by participants (i.e., computer adaptive testing). This enables a more tailored experience for a patient and a more clear picture of their outcomes. Item banks are available for adults, children and parent proxies. They cover an extensive range of conditions, symptoms and symptom areas broadly grouped under mental health, physical health and social health. For example, there are different item banks for physical function, itch, sleep disturbance and dyspnea, all under adult physical health. Item banks in PROMIS have been derived through selection and refinement of existing well-validated PROMs. The PROMIS-29 one of the most widely-used of the tools; it is a generic PROM that assesses depression, anxiety, physical function, pain interference, fatigue, sleep disturbance, and participation in social roles and activities. DeWalt, D. A., Rothrock, N., Yount, S., & Stone, A. A. (2007). Evaluation of item candidates: the PROMIS qualitative item review. Medical care, 45(5 Suppl 1), S12. see 10.1097/01.mlr.0000254567.79743.e2 Unidimensional Self-report Validation is ongoing - some item banks (e.g., fatigue, physical function, pain, emotional distress) and survey forms have undergone validation (construct validity, reliability according to item response theory), while others have been validated in specific populations. Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., ... & Cook, K. (2010). The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of clinical epidemiology, 63(11), 1179-1194. See also:… Yes Yes, fees may apply… Wagner, L. I., Schink, J., Bass, M., Patel, S., Diaz, M. V., Rothrock, N., ... & Cella, D. (2015). Bringing PROMIS to practice: brief and precise symptom screening in ambulatory cancer care. Cancer, 121(6), 927-934. PROMIS-29 (2017):… Extensive range of survey tools to cover a multitude of conditions and symptoms.
Generic   Pediatric Quality Of Life Inventory PedsQL USA 2001 Measures health-related quality of life in children and adolescents (2-18 years). Includes Generic Core Scales (23 items) with an expanding number of Disease-specific Modules (e.g., gastrointestinal symptoms) also available. 4: Physical, emotional, social, school Self-report, parent proxy Known groups validity and internal consistency reliability have been demonstrated. There is ongoing validation for disease-specific modules. Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Medical care, 39(8), 800-812.… Yes Yes, fees may apply Fisak, B., Belkin, M. H., Von Lehe, A. C., & Bansal, M. M. (2012). The relation between health‐related quality of life, treatment adherence and disease severity in a paediatric sickle cell disease sample. Child: care, health and development, 38(2), 204-210. doi: 10.1111/j.1365-2214.2011.01223.x Electronic persistent pain outcomes collaboration - Annual data report (2016):… Available in multiple other languages.
Generic   Primary Care Outcomes Questionnaire PCOQ UK 2018 A 24 item questionnaire designed to measure a range of outcomes in primary care.  4: Health and wellbeing, health knowledge and self-care, confidence in health provision, confidence in health plan Self-report Internal consistency and exploratory factor analysis used for validation. Murphy, M., Hollinghurst, S., Cowlishaw, S., & Salisbury, C. (2018). Primary Care Outcomes Questionnaire: psychometric testing of a new instrument. Br J Gen Pract, 68(671), e433-e440. Yes No None identified in June 2019 None identified in June 2019  
Generic   Quality Of Recovery-15 QoR-15 Australia 2013 The QoR-15 is a patient-reported outcomes measure after day case surgery and anaesthesia. Fifteen questions assess the domains of pain, physical comfort, physical independence, emotions and psychological support. 5: Pain, physical comfort, physical independence, emotions, psychological support Self-report Internal consistency, construct validity, and responsiveness to change have been demonstrated. Stark, P. A., Myles, P. S., & Burke, J. A. (2013). Development and Psychometric Evaluation of a Postoperative Quality of Recovery ScoreThe QoR-15. The Journal of the American Society of Anesthesiologists, 118(6), 1332-1340.… Unknown Unknown Contact: Dr. Myles, Kleif, J., Waage, J., Christensen, K. B., & Gögenur, I. (2018). Systematic review of the QoR-15 score, a patient-reported outcome measure measuring quality of recovery after surgery and anaesthesia. British journal of anaesthesia, 120(1), 28-36. None identified in June 2019  
Generic   Sheehan Disability Scale SDS USA 1983 The Sheehan Disability Scale (SDS) was developed as a global measure of the impact of mental illness on functioning (Sheehan, 1983). The SDS is a composite of three self-rated, 10-point Likert scale response items that aim to assess the level of the subjects' impairment with regard to their work/school activities, family relationships, and social functioning. In addition, the numbers of lost and unproductive days due to symptoms are reported in two single items not included in the total score. 3: work/school activities, family relationships, social functioning Self-report Internal consistency, test-retest reliability, convergent and discriminant validity have been demonstrated. Arbuckle, R., Frye, M. A., Brecher, M., Paulsson, B., Rajagopalan, K., Palmer, S., & Degl'Innocenti, A. (2009). The psychometric validation of the Sheehan Disability Scale (SDS) in patients with bipolar disorder. Psychiatry research, 165(1-2), 163-174. Yes Yes, fees may apply Olvet, D. M., Carrión, R. E., Auther, A. M., & Cornblatt, B. A. (2015). Self‐awareness of functional impairment in individuals at clinical high‐risk for psychosis. Early intervention in psychiatry, 9(2), 100-107. None identified in June 2019  
Generic   Short Form 36 (SF-36) Health Survey SF-36 UK 1992 The SF-36, also known as the Medical Outcomes Study (MOS) 36 item Short Form Health Survey, is a generic, multipurpose, health survey consisting of 36 items. It yields an eight-scale profile of scores as well as physical and mental health summary measures. The SF-36 has been revised (Version 2.0) since the original version was developed (Version 1.0), with improvements being made to the two role functioning scales, and simpler instructions and items. Translations are available for multiple languages (currently 170 translations are available). Shorter versions of the scale have also been developed (SF-12, SF-8). The SF-36 was used in development of the RAND-36 and has also been referred to as the MHQ-14. 8: Vitality, physical functioning, bodily pain, general health perceptions, physical role functioning, emotional role functioning, social role functioning, mental health Self-report Internal consistency, test-retest reliability, convergent and discriminant validity have been demonstrated. Brazier, J. E., Harper, R., Jones, N. M., O'cathain, A., Thomas, K. J., Usherwood, T., & Westlake, L. (1992). Validating the SF-36 health survey questionnaire: new outcome measure for primary care. Bmj, 305(6846), 160-164. Yes Yes, fees may apply… Matcham, F., Scott, I. C., Rayner, L., Hotopf, M., Kingsley, G. H., Norton, S., ... & Steer, S. (2014, October). The impact of rheumatoid arthritis on quality-of-life assessed using the SF-36: a systematic review and meta-analysis. In Seminars in arthritis and rheumatism (Vol. 44, No. 2, pp. 123-130). WB Saunders. SF-36 interim norms for Australian data (1996):…  
Generic   The Impact On Life Questionnaire IoL New Zealand 2016 A 6 item measure developed to assist with the prioritisation of patients for elective surgery. It assesses the overall impact of health conditions on a patient’s activities of daily living, assuming that a condition may affect several domains concurrently, Originally developed for use with cataract patients but validated among those awaiting orthopaedic surgery. 6: Social interaction, personal interaction, ability to fulfil responsibilities to others, personal care, personal safety, and leisure activities Self-report Construct validity, internal consistency, and test-retest reliability have been demonstrated. Chan, G., Bezuidenhout, L., Walker, L., & Rowan, R. (2016). The Impact on Life questionnaire: validation for elective surgery prioritisation in New Zealand prioritisation criteria in orthopaedic surgery. The New Zealand Medical Journal (Online), 129(1432), 26.… Unknown Unknown Contact: Robert Rowan, Hunter, R. J., Buckley, N., Fitzgerald, E. L., MacCormick, A. D., & Eglinton, T. W. (2018). General Surgery Prioritization Tool: a pilot study. ANZ journal of surgery, 88(12), 1279-1283. None identified in June 2019  
Generic   Veterans RAND 36 Item Health Survey RAND-36, VR-36 USA 2001 The Veterans RAND 36 (Version 1.0) Item Health Survey is a generic, multi-use, self-administered health surveys comprised of 36 items. The RAND-36 have identical items to the SF-36, but the scoring algorithm is somewhat different. The RAND-36 is available in multiple languages. The VR-36 differs from the RAND-36 in the use of 5-point response choices for two of the scales, leading to higher reliability and validity of the scale. The VR-12 includes 12 items from the VR-36. 8: Physical functioning, role limitations, bodily pain, energy-fatigue, social functioning, emotional well-being, mental health, general health Self-report Principal components analysis demonstrated the structure of he scale. McHorney, C. A., Ware, J. E., & Raczek, A. E. (1993). The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. MEDICAL CARE-PHILADELPHIA-, 31, 247-247. Yes No… Mattila, K., Lahtela, M., & Hynynen, M. (2012). Health-related quality of life following ambulatory surgery procedures: assessment by RAND-36. BMC anesthesiology, 12(1), 30. None identified in June 2019  
Generic   Views On Inpatient Care VOICE UK 2012 A 19 item patient-reported outcome measure of perceptions of acute care. Suitable for use in hospitals. Unidimensional Self-report Acceptable internal consistency, test–retest reliability, and criterion validity have been demonstrated. Evans, J., Rose, D., Flach, C., Csipke, E., Glossop, H., Mccrone, P., ... & Wykes, T. (2012). VOICE: developing a new measure of service users' perceptions of inpatient care, using a participatory methodology. Journal of Mental Health, 21(1), 57-71. Unknown Unknown Contact: Joanne Evans, Csipke, E., Williams, P., Rose, D., Koeser, L., McCrone, P., Wykes, T., & Craig, T. (2016). Following the Francis report: investigating patient experience of mental health in-patient care. The British Journal of Psychiatry, 209(1), 35-39.
None identified in June 2019  
Generic Chronic pain West Haven-Yale Multidimensional Pain Inventory WHYMPI USA 1985 A measure assessing chronic pain in individuals, it comprises 52 items across 12 subscales and 3 overall domains. It can also be administered in separate parts. 3: Pain experience, the responses of others to the patient's pain, extent of participation in daily activities Self-report Principal axis factor, convergent and discriminant validity, internal consistency and test-retest reliability have been demonstrated. Kerns, R. D., Turk, D. C., & Rudy, T. E. (1985). The west haven-yale multidimensional pain inventory (WHYMPI). Pain, 23(4), 345-356. Yes No Barth, K. S., Maria, M. M. S., Lawson, K., Shaftman, S., Brady, K. T., & Back, S. E. (2013). Pain and motives for use among non‐treatment seeking individuals with prescription opioid dependence. The American journal on addictions, 22(5), 486-491. None identified in June 2019 Available in Spanish, German, Chinese and other languages.
Generic   WHO (Five) Well-Being Index WHO-5 Denmark 2003 The World Health Organisation- Five Well-Being Index (WHO-5) is a 5 item self-reported measure of current mental wellbeing. The WHO-5 is suitable for children aged 9 and above. Unidimensional Self-report Item response theory analyses in studies of younger persons and elderly persons indicate that the measure has good construct validity as a unidimensional scale measuring well-being. Bech, P., Olsen, L. R., Kjoller, M., & Rasmussen, N. K. (2003). Measuring well‐being rather than the absence of distress symptoms: a comparison of the SF‐36 Mental Health subscale and the WHO‐Five well‐being scale. International journal of methods in psychiatric research, 12(2), 85-91. ; Topp, C. W., Østergaard, S. D., Søndergaard, S., & Bech, P. (2015). The WHO-5 Well-Being Index: a systematic review of the literature. Psychotherapy and psychosomatics, 84(3), 167-176. Yes No Halliday, J. A., Hendrieckx, C., Busija, L., Browne, J. L., Nefs, G., Pouwer, F., & Speight, J. (2017). Validation of the WHO-5 as a first-step screening instrument for depression in adults with diabetes: Results from Diabetes MILES–Australia. Diabetes research and clinical practice, 132, 27-35. None identified in June 2019  
Generic   Work Productivity And Activity Impairment Questionnaire WPAI USA 1993 A measure of work productivity and health outcomes including time missed from work, and impairment of work and regular activities due to health and symptoms. The brief instrument (6 items) asks individuals about the number of hours missed from work because of their health problem, and the extent it affected their productivity while at work, as well as other activities. Different versions have been developed by other research groups and validated for specific conditions such as dermatitis, irritable bowel syndrome and allergic rhinitis. Used for patients with chronic diseases. 3: Absenteeism, presenteeism and overall work impairment Self-report, interview Construct validity and reproducibility have been demonstrated. Reilly, M. C., Zbrozek, A. S., & Dukes, E. M. (1993). The validity and reproducibility of a work productivity and activity impairment instrument. Pharmacoeconomics, 4(5), 353-365. No No Vietri, J., Joshi, A. V., Barsdorf, A. I., & Mardekian, J. (2014). Prescription opioid abuse and tampering in the United States: Results of a self-report survey. Pain Medicine, 15(12), 2064-2074. None identified in June 2019  
Generic   World Health Organization Disability Assessment Schedule 2.0 WHODAS 2.0 International 2010 A generic assessment instrument for health and disability. Can be used across all diseases, including mental, neurological and addictive disorders. Applicable across cultures, in all adult populations. Directly linked at the level of the concepts to the World Health Organisation's International Classification of Functioning, Disability and Health (ICF). Consists of 36 item and 12 item versions. 6: Cognition, mobility, self-care, getting along, life activities, participation Self-report, Proxy Item-response theory, factor analysis and test-retest reliability have been demonstrated. Üstün, T. B., Chatterji, S., Kostanjsek, N., Rehm, J., Kennedy, C., Epping-Jordan, J., ... & Pull, C. (2010). Developing the World Health Organization disability assessment schedule 2.0. Bulletin of the World Health Organization, 88, 815-823.… Yes No… Konecky, B., Meyer, E. C., Marx, B. P., Kimbrel, N. A., & Morissette, S. B. (2014). Using the WHODAS 2.0 to assess functional disability associated with DSM-5 mental disorders. American Journal of Psychiatry, 171(8), 818-820. None identified in June 2019  
Generic   World Health Organization Quality Of Life  WHOQOL International, including Australia 1998 The World Health Organization Quality of Life (WHOQOL-100) questionnaire is a generic quality of life (QoL) measurement tool used in various cultural and social settings and across different patient and healthy populations. It was developed collaboratively in 15 cultural settings over several years and has been field tested in 37 centres. It consists of 100-questions that has been translated into 29 languages. It yields a multi-dimensional profile of scores
across domains and sub-domains (facets) of quality of life. More recently, the WHOQOL-BREF, an abbreviated 26 item version has been developed.
6: Physical, psychological, level of independence, social relationships, environment, spirituality/religion/personal beliefs Self-report Discriminant validity, content validity and test-retest reliability have been demonstrated. Group, T. W. (1998). The World Health Organization quality of life assessment (WHOQOL): development and general psychometric properties. Social science & medicine, 46(12), 1569-1585. doi:10.1016/S0277-9536(98)00009-4 Unknown Unknown Snell, D. L., Siegert, R. J., Surgenor, L. J., Dunn, J. A., & Hooper, G. J. (2016). Evaluating quality of life outcomes following joint replacement: psychometric evaluation of a short form of the WHOQOL-Bref. Quality of Life Research, 25(1), 51-61. WHOQOL-BREF - Introduction, Administration, Scoring and Generic Version of the Assessment (1996):