Measuring independence from the patient perspective in rheumatoid arthritis remission: a scoping literature review of existing instruments by the OMERACT patient perspective of RA remission group.

AIMS: Independence in the context of rheumatoid arthritis (RA) remission from the patient perspective consists of five components: being physically and functionally able, participation beyond function, cognitive independence, autonomy, and assistance. This scoping review aimed to identify instruments that measure independence and/or any of these five components in patients with rheumatic and musculoskeletal diseases (RMDs). METHODS: We systematically searched PubMed, Embase and Cochrane databases for publications (12/12/2004 to 12/17/2024) focused on developing or validating an instrument measuring independence and/or any of its five components in patients with RMDs. Studies were included if they involved adult participants and were written in English. Following calibration with a standardized protocol, data extraction was performed by six reviewers using Nature Research Assistant (AI-powered research tool) followed by manual checking, then synthesized thematically. RESULTS: Of the 2818 abstracts identified, 75 studies (30 cross-sectional, 19 cohort, 8 randomized trials and 5 qualitative) evaluating 54 instruments were included. Studies were heterogeneous. Most studies (n=71) addressed the theme of "being physically and functionally able", followed by "participation beyond function" (n=53), assistance (n=28), cognitive independence (n=19) and autonomy (n=16). Only three instruments measured all five themes of independence, with none studied in the context of RA remission. Studies validated instruments as a composite index and/or its component domains. CONCLUSION: Most studies evaluated instruments measuring "being physically and functionally able" and "participation beyond function". No studies tested instruments addressing all the themes of independence in the context of RA remission. A new measure of independence is recommended to be developed.