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

Khoo, Thomas; Jones, Bethan; Chin, Athena; Terrett, Alice; Voshaar, Marieke; Hoogland, Wijnanda; March, Lyn; Beaton, Dorcas; Gazel, Ummugulsum; Shea, Beverley; Tugwell, Peter; Flurey, Caroline-A; Proudman, Susanna


Thomas Khoo

Bethan Jones

Athena Chin

Alice Terrett

Marieke Voshaar

Wijnanda Hoogland

Lyn March

Dorcas Beaton

Ummugulsum Gazel

Beverley Shea

Peter Tugwell

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Caroline Flurey
Associate Professor in Men's Health and Long-term Conditions

Susanna Proudman


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.


Khoo, T., Jones, B., Chin, A., Terrett, A., Voshaar, M., Hoogland, W., …Proudman, S. (2023). Defining independence: A scoping review by the OMERACT patient perspective of remission in rheumatoid arthritis group. Seminars in Arthritis and Rheumatism, 58, 152152.

Journal Article Type Review
Acceptance Date Nov 7, 2022
Online Publication Date Dec 19, 2022
Publication Date Feb 1, 2023
Deposit Date Mar 2, 2023
Journal Seminars in Arthritis and Rheumatism
Print ISSN 0049-0172
Electronic ISSN 1532-866X
Publisher Elsevier
Peer Reviewed Peer Reviewed
Volume 58
Pages 152152
Keywords Rheumatoid arthritis; Outcome measures; Patient perspective; Independence; Scoping Review; OMERACT
Public URL
Publisher URL
Additional Information Supplementary material associated with this article can be found, in
the online version, at doi:10.1016/j.semarthrit.2022.152152