Patient involvement in the development of patient-reported outcome measures used following hip or knee arthroplasty: a scoping review.

Purpose: Involving patients in developing patient-reported outcome measures (PROMs) is essential for accurately capturing their perspectives. However, understanding how patients were involved in developing PROMs used after hip or knee arthroplasty is limited. This scoping review aimed to evaluate whether patients were involved in the development of these PROMs and how they were involved.

Methods: Two independent reviewers documented patient involvement in item development and comprehensibility testing for 50 PROMs used after hip or knee arthroplasty. Trends in patient involvement over time were analyzed using binary logistic regression.

Results: There was no documentation of patient involvement in a collaborative role during the PROM development processes. Regarding the consultative role, of these 26 PROMs, they contributed to item development in 13 PROMs (26%) and comprehensibility testing in four PROMs (8%) and both item development and comprehensibility testing in nine PROMs (18%). Patients who underwent arthroplasty were involved in one or both phases in ten PROMs (20%), while patients with other lower extremity conditions were involved in 16 PROMs (32%). Patients who underwent arthroplasty contributed to both phases in five PROMs: Oxford Knee Score-Activity and Participation Questionnaire, Patient's Knee Implant Performance Questionnaire, Patient-Reported Outcomes Measurement Information System R-Plus-Osteoarthritis of the Knee, Oxford Arthroplasty Early Recovery Score and Oxford Arthroplasty Early Change Score. In addition, our analysis revealed no significant change in patient involvement in a consultative role during either item development or comprehensibility evaluation over time since 1982, when the first PROM included in this review was developed (p = 0.21).

Conclusions: Almost half of PROMs used after arthroplasty did not involve patients in their development, highlighting the need to address this gap in development of PROMs. There is also a need to analyze PROMs to ensure they accurately reflect the outcomes that matter to patients.