Up until 2012, the number of re-operations was the primary indicator used in Australia to identify failure in surgical reconstruction or replacement for knees and hips. While important to measure, this indicator does not take into account the many subjective aspects of the post-surgical patient experience including pain, functional improvement and quality of life. To address this gap, the Arthroplasty Clinical Outcomes Registry, National (ACORN) was a multisite initiative set up to monitor, evaluate and report on clinical outcomes. For the first time in Australia, Patient Reported Outcome Measures (PROMs) for knee and hip arthroplasty were collected from multiple sites in a centralised and standardised fashion. With the broader aim of driving practice improvement and informed clinical decision making, the registry produced and delivered comprehensive reports of patient outcomes to prospective surgical patients, surgeons and hospital departments of participating institutions.
From an operational perspective, a designated site coordinator in each of the participating institutions was responsible for identifying patients meeting the inclusion criteria and explaining the purpose of ACORN to them, as well as ensuring the integrity and quality of the data collected. Using an op-out consent approach bolstered the numbers of patients in the registry. Initial data collection took place at the pre-admission clinic, with a follow-up interview with the patient then occurring approximately six months after their procedure. In 2017, the registry successfully reached a follow-up rate of almost 95%. Using phone interviews was considered to be the main facilitator of this success, as postal follow-up was shown to have a very low response rate. Within hospitals, having surgeons engaged in the process was also key to successfully implementing the collection of patient-reported outcome data.
A range of demographic and clinical data (e.g., comorbidities) were collected from patients in addition to PROMs assessing various aspects of the patients’ experience. These included the widely used generic health-related quality of life measure EQ-5D, and the Oxford Knee or Oxford Hip Score, which were combined with a patient satisfaction question, a global perceived improvement question and a question on surgical complications and hospital re-admissions. Beyond clinical practice evaluation and measuring patient satisfaction, having a centralised and standardised registry has allowed for risk-adjusted comparisons between different surgeons and institutions, and provided further insight into the effectiveness of knee or hip arthroplasty, which are widely delivered and resource-intensive procedures.
'The theory is that we couldn’t improve the quality of care unless we measured it and, at the time, there was no system set up to measure PROMs after hip and knee surgery, so we set up such a system.'
Professor Ian Harris, Steering Committee Chair, ACORN
ACORN involved the voluntary participation of hospitals that perform hip or knee arthroplasty, and, at its peak, 10 NSW hospitals took part. While the registry has now concluded, the standardised collection of PROMs for joint replacements has only expanded. Since 1999, the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) has had a long and successful history of collecting and using clinical outcome data (e.g., revision surgery, mortality) from all joint replacement surgeries in Australia, more than 120,000 a year across 315 hospitals. In 2018, the AOANJRR commenced a pilot project in 45 hospitals nationwide, including public and private hospitals, and all those previously involved in ACORN, to collect patient-reported outcomes for hip, knee and shoulder replacement surgeries.
Although run similar to ACORN and using many of the same PROMs, the AOANJRR pilot has primarily collected patient data through a specially-developed, user-friendly web-based platform. This has not only increased the cost-effectiveness of data collection, but enabled direct feedback to all stakeholders through the online dashboard, including patients who receive information on how their experience compares to national averages. The platform also facilitates other research opportunities.
Data collection for the pilot commenced in July 2018 and the 6-month post-operative follow-up will continue up until the fourth quarter of 2019; a formal evaluation will be published at the end of 2019, however, there is already a clear sense of the project’s success and what has contributed to this success. The association of the project with a long running, well-governed registry has strengthened its credibility. Early involvement of surgeons and hospitals was key in getting the PROMs pilot project set up. The ongoing engagement with these stakeholders at site, and particularly the coordinators who identify eligible patients has also been important. Challenges have mainly been system issues including the time required to get multiple ethics and governance approvals, changes in staff acting as site coordinators, identification and recruitment of patient pre-operatively and occasional difficulties in linking patients’ responses. Finally, while there were some initial concerns that web-based data collection would be poorly adopted by the generally older patients receiving joint replacements (average age 60-70 years), in fact response rates have been quite good, with over 90% consenting to pre-operatively, and as many as 80-85% contributing data at 6-month follow up, particularly when a phone call follow up was used. The plan going forward is to secure funding to make the collection of patient-reported outcomes a permanent part of the AOANJRR.
'We’ve developed online dashboard reporting, so patients get their own dashboard and they can see how they compare against national averages... We also give that reporting back to surgeons, to hospitals, to state governments and to project funders. Depending on the level of stakeholder affects what they see in that dashboard… We have had general feedback from people to say it’s very helpful to be able to see national comparison. Currently people use PROMs data to assess a patient on an individual level but they don’t really have an understanding of how that relates to the general public or the national average.'
Grace O’Donohue, Project Manager, AOANJRR
- Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) website
- EQ-5D Instruments
- Dawson, J., Fitzpatrick, R., Murray, D., & Carr, A. (1998). Questionnaire on the perceptions of patients about total knee replacement. The Journal of bone and joint surgery. British volume, 80(1), 63-69. https://doi.org/10.1016/j.arth.2011.12.015
- Dawson, J., Fitzpatrick, R., Carr, A., & Murray, D. (1996). Questionnaire on the perceptions of patients about total hip replacement. The Journal of bone and joint surgery. British volume, 78(2), 185-190. https://doi.org/10.1302/0301-620X.78B2.0780185