Defining independence: A scoping review by the OMERACT patient perspective of remission in rheumatoid arthritis group

Aims: The Outcome Measures in Rheumatology Trials (OMERACT) Remission in Rheumatoid Arthritis (RA) patient perspective working group has previously found that patients prioritised independence, pain, and fatigue as key domains of remission in RA. However, there is currently no clear definition of independence. Consequently, this scoping review aimed to explore how independence is represented in the RA literature.

Methods: A comprehensive search of the EMBASE, Medline, and PsycInfo databases was performed for publications that used independence or autonomy as a disease activity measure, description of disease in remission or treatment outcome. Papers were included if they involved adult participants and were written in English, with no restrictions on study design or publication year. Two reviewers (TK and AC, AT or BJ) independently screened the abstracts. A thematic approach was applied to derive common definitions and descriptions of independence.

Results: 660 articles were identified, of which 58 (25 qualitative, 28 quantitative, one mixed, and four reviews) met the inclusion criteria. 86% of total participants were female. Ten publications referenced remission. Independence took many forms; in addition to physical and functional capability, it was described in relation to work, social activities, autonomy in healthcare, and household activities. Four common themes describing independence were identified: 1. A return to a state before arthritis. 2. Being physically and functionally able. 3. A sense of freedom without needing to rely on others. 4. Having control over the organisation of one's life.

Conclusion: Although independence is frequently mentioned in the RA literature, it has various meanings, lacks a consistent definition, and is a concept rarely applied to remission. It is multi-factorial, exceeding functional ability alone, and contextualised within sociodemographic and disease factors. This scoping review provides common descriptions of independence to inform future qualitative work towards the development of an outcome measure of independence for the assessment of RA in remission.