Generic Patient-Reported Outcome Measures in rehabilitation medicine

Abstract

In this thesis, we evaluated the measurement properties and clinical use of generic patient-reported outcome measures (PROMs) in rehabilitation medicine using data from the MUREVAN project. The overall aim was to determine which generic PROMs are most suitable for evaluating rehabilitation outcomes and to explore their value in clinical practice. We evaluated the measurement properties of generic PROMs assessing quality of life, participation, physical functioning, self-regulation, mental health, and symptoms in inpatient and outpatient rehabilitation populations, with a focus on test-retest reliability and responsiveness. First, we compared the measurement properties of two participation PROMs in a cross-sectional cohort of former rehabilitation patients: the Utrecht Scale for Evaluation of Rehabilitation–Participation (USER-P) Restriction and Satisfaction subscales and the PROMIS Ability to Participate in Social Roles and Activities (PROMIS-APS) and Satisfaction with Social Roles and Activities (PROMIS-SPS) short forms. Although both instruments demonstrated comparable internal consistency, construct validity, and discriminative validity, the USER-P covered a broader range of participation domains. Subsequently, the test-retest reliability and responsiveness of the USER-P Restriction and PROMIS-APS were evaluated in prospective cohorts of inpatient and outpatient rehabilitation patients. Both instruments demonstrated sufficient test-retest reliability across settings. Responsiveness was comparable in outpatients, whereas larger changes were observed for the USER-P Restriction than for the PROMIS-APS in inpatients. The measurement properties of the Self-Regulation Assessment (SeRA) were also evaluated. The SeRA demonstrated sufficient to excellent test-retest reliability across rehabilitation settings, while responsiveness differed between settings, with larger changes observed in outpatient rehabilitation. Overall, the evaluated PROMs were able to detect meaningful changes at group level, although their ability to reliably detect change at individual patient level was limited. An evaluation of all generic PROMs included in the MUREVAN project (also EuroQoL-5D-5L and PROMIS Global Health, Physical Functioning, Mental Health, Fatigue and Pain) confirmed these findings, demonstrating that measurement performance varies across rehabilitation settings. These results suggest that the selection of generic PROMs should be tailored to the specific rehabilitation context rather than adopting a one-size-fits-all approach. In addition to evaluating measurement properties, this thesis examined the use of generic PROMs in routine rehabilitation care from the perspectives of patients and healthcare professionals. Patients after stroke considered PROMs feasible and relevant and reported that they increased insight into their health status and supported discussions during follow-up consultations. PROMs were perceived as valuable for identifying patient priorities and informing decisions about further care. Rehabilitation professionals experienced the SeRA as a useful tool for addressing self-regulation, facilitating meaningful conversations with patients, and evaluating rehabilitation progress. They emphasised that successful implementation depends on appropriate timing, integration into existing clinical workflows and electronic health records, and embedding PROMs into routine clinical practice. Overall, this thesis demonstrates that generic PROMs are reliable instruments for evaluating rehabilitation outcomes at group level and can contribute to person-centered rehabilitation at individual level by supporting meaningful patient-professional communication. Their value in clinical practice depends not only on adequate measurement properties but also on selecting PROMs that are appropriate for the rehabilitation setting and implementing them successfully within routine care.