Remission is now a realistic outcome of the treatment of rheumatoid arthritis (RA) because of advanced treatments. Although the remission criteria of the American College of Rheumatology/European Alliance of Associations for Rheumatology (ACR/EULAR) include the Patient Global Assessment (PtGA) [1], there are concerns that this may not sufficiently capture the patient’s perspective [2]. Thus, the OMERACT ‘Remission in RA: Patient Perspective’ Working Group was formed in 2010 to explore what additional components patients consider essential criteria for describing remission and how this differs from the remission criteria used by ACR/EULAR in RA [2].

A previous international focus group in 2015 and survey studies in 2017 by this OMERACT Working Group identified pain, fatigue, and independence as the top three most important domains to patients for measuring remission in RA [3,4]. This Working Group then conducted a longitudinal cohort study of RA patients with low disease activity or in patient-perceived remission to identify candidate instruments for these three domains and to explore their value in assessing RA remission. Validated instruments were used to measure pain and fatigue; these were found to work well for both stable disease and to detect changes in disease activity [5].

For independence, no validated scale was found. Therefore, to measure independence, working group leaders developed a question in 2021: "Over the last week, have you been able to do things as and when you want, without needing any kind of assistance?" scored from 0, meaning no assistance to 10 needing a lot of assistance [5]. However, while the new independent NRS (Numerical Rating Scale) worked well with stable disease activity, it did not perform well in predicting change [5]. Thus, the independence domain needs further exploration, and a validated measure needs to be developed.

The role of the PtGA in determining remission in RA has been widely discussed in the literature [[6], [7], [8], [9], [10]]. Patient delegates at the Remission in RA: Patient perspective special interest group (SIG) meeting at OMERACT 2020 expressed uncertainty about which aspects of their condition to focus on when completing the PtGA, noting their focus changed each time they completed it. It was proposed that patient-reported pain, fatigue, and/or independence measures may be considered to replace or augment the PtGA criterion in the current remission criteria. A first step towards this is to explore whether pain, fatigue, and independence cover the PtGA in remission or whether patients feel that something will be left out [10].

At the 2020 SIG meeting, delegates voted in favour of further research into independence (90 % all delegates; 94 % patient delegates) [10].Informing the development or selection of a validated patient-reported outcome measure for independence requires an initial understanding of how patients define and interpret independence. . An OMERACT SIG meeting of the ‘Remission in RA: Patient Perspective’ Working Group was held in February 2024 to review progress toward this objective and to discuss next steps.”

Our group conducted a scoping review, presented in the SIG meeting, which aimed to explore how the concept of independence is represented in the RA literature and to identify any descriptions or definitions in the context of remission [11]. Relevant databases were systematically searched to identify publications that discussed independence or the related concept of “autonomy” as a measure of disease activity, a descriptor of remission, or an outcome of treatment. A total of fifty-eight publications were included in the final analysis, ten of which specifically referenced remission. The review revealed that independence in RA extends beyond physical and cognitive functioning to encompass broader dimensions such as employment, social engagement, autonomy in healthcare decisions, and domestic responsibilities. Four major themes were identified as central to the conceptualization of independence: 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 organization of one's life. A graphic abstract summarizing the review’s methods and key findings is provided in Supplementary Figure 1.

In this manuscript, we aim to present patients’ perspectives on what independence means in the context of remission and to summarize the group's feedback on the SIG's previous research findings.