Towards the development of a definition of independence for individuals diagnosed with rheumatoid arthritis in remission: an 'OMERACT remission in rheumatoid arthritis patient perspective' special interest group report

AIMS: To discuss and refine the preliminary definition of "independence" from the patient's perspective in RA remission. METHODS: Data from a scoping review and international focus groups were presented at the OMERACT Remission in RA Patient Perspective Special Interest Group (SIG) meeting in February 2024. The SIG included 40 delegates from diverse geographic regions who discussed the findings and potential refinements of the preliminary definition of independence from the patient's perspective in the context of RA remission. RESULTS: Drawing together findings from the scoping review and focus groups, the following preliminary definition of "independence" was presented for discussion: "Being able to do what you want, when you want, in the way you want to do it." Delegates emphasized the importance of capturing all aspects of independence, adjustments to the proposed preliminary definition were suggested, and some delegates requested more specificity before taking the preliminary definition forward for use in the next research stage. Issues were raised on whether cultural variation on concepts of independence was adequately captured in the qualitative work so far. For example, some cultures may value receiving support from others as a reaffirmation of social belonging and interdependence, rather than a contradiction of independence. This will need addressing in our future work to ensure cross-cultural differences in definitions of independence are not missed. The majority of delegates voted in favour of continuing the work toward defining targeted sub-domains, which will allow the group to develop an instrument to assess independence in RA remission from the patient's perspective. CONCLUSION: Consensus was reached in favour of continuing the work towards defining targeted sub-domains, which will allow the group to develop an instrument to assess independence in RA remission from the patient's perspective. However, suggestions were made to refine and improve the current definition. The next steps include refining the definition, followed by identifying and/or developing instruments to create an outcome measure for independence in RA remission