Assessing Participation Among Stroke Survivors: A Systematic Review of Patient-Reported Outcome Measures

Introduction: Stroke significantly impacts survivors' lives, affecting their physical, cognitive, and emotional well-being. Understanding how these individuals participate in daily activities and societal roles is crucial for optimal rehabilitation and support. Patient-reported outcome measures (PROMs) offer valuable insights into stroke survivors' experiences and perceptions regarding their participation in various life aspects. This systematic review focuses on PROMs specifically designed to evaluate participation following stroke, based on the International Classification of Functioning, Disability and Health (ICF). By analyzing existing measures, this review is aimed at identifying gaps, strengths, and opportunities for enhancing participation assessment in stroke rehabilitation. Method: A comprehensive search of keywords related to stroke, participation, and assessment was conducted across multiple databases, including Scopus, Embase, Medline, Cochrane Library, PEDro, and OTseeker. The review process was conducted based on the PRISMA-Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines. The COSMIN checklist was utilized to investigate the psychometric properties of the studies, and the results were synthesized narratively. Results: Thirty-seven studies were ultimately included in the review after the full-text evaluation. The review identified 10 PROMs, including the Functional Behavior Profile, Meaningful Activities Participation Assessment, Nottingham Extensive Activities of Daily Living Scale, Rivermead Mobility Index, Reintegration to Normal Living Index, The Subjective Index for Physical and Social Outcome, and Stroke Impact Scales. While these tools are developed with appropriate psychometric properties and focus on varying dimensions of survivors' participation, significant gaps remain in fully addressing their comprehensive needs. Specifically, the tools often overlook contextual differences and fail to adequately assess satisfaction in daily activities. Conclusion: The identified gaps illustrate the need for more comprehensive measures that accurately capture stroke survivors' diverse experiences. Improving these assessments is essential for informing clinical practice and rehabilitation strategies, ultimately enhancing patient engagement, satisfaction, and quality of life and improving rehabilitation outcomes for stroke survivors.