“Back to being normal”: The patient perspective on remission in rheumatoid arthritis.

Van Tuyl, L; Stamm, T; Boers, M; Davis, B; Flurey, Caroline; Hoogland, W; Kirwan, J; Sanderson, T; Sadlonova, M; van Shaardenburg, A; Scholte-Voshaar, M; Smolen, J; Hewlett, Sarah

Abstract

Background: The aim of current rheumatoid arthritis treatment is remission. As treatment should be targeted at patient relevant outcomes, it is important to know how patients perceive remission.

Objectives: The objective of this study was to explore and understand the patient perspective on remission in RA.

Methods: Nine focus group interviews in Austria, Netherlands and UK were conducted, including patients in ACR/EULAR remission, self-declared remission and in moderate to high disease activity in each country. Using an agreed interview guide, patients were asked about how they experienced periods of remission, how these periods differ from high disease activity, and how remission might be measured. Focus groups were tape recorded, transcribed in the local language and analysed by an independent researcher in each country (inductive thematic analysis). Identified themes were discussed between researchers and patient research partners across countries to develop a common understanding.
Results: 47 RA patients (66% female) with a mean disease duration of 9 years participated. Three major themes of patient perceived remission emerged.

1) Symptoms, impact and normality: “I can just get on and do whatever I like.” It was important to patients that specific symptoms were reduced (pain, stiffness, fatigue, swelling, disability), but the reduction in impact these led to was more important (independence, able to do valued activities, feeling able to cope, improved mood), leading to a return to normality (work, family role).

2) Variation in acceptable levels: “That's my remission whereas somebody else's threshold is completely different”. Patients varied in the level of symptom/impact they thought necessary to achieve remission (eg 0 to 4 swollen joints), and many thought the EULAR criteria were too stringent. Others were disappointed with the symptoms they still experienced while in clinical remission.

3) Conceptual issues “It's your own interpretation of the word”. There was confusion over the patient global measure, which was felt to be inappropriately worded to capture remission as it did not ask about disease activity; patients felt that the score was heavily influenced by their mood that day. Patients struggled with the concept of remission itself, feeling it was confounded by normal ageing, side effects of medication, symptoms from co-morbidities and accrued damage to joints.

Conclusions: Patients characterize remission by the absence or reduction in certain symptoms, their decreased impact, and a return to normality. The patient global assessment, which should capture the patient perspective in the ACR/EULAR remission criteria, was not perceived capable to reflect remission.

Citation

Van Tuyl, L., Stamm, T., Boers, M., Davis, B., Flurey, C., Hoogland, W., …Hewlett, S. (2013, June). “Back to being normal”: The patient perspective on remission in rheumatoid arthritis. Poster presented at EULAR 2013, Madrid

• Presentation Conference Type: Poster
• Conference Name: EULAR 2013
• Conference Location: Madrid
• Start Date: Jun 12, 2013
• End Date: Jun 15, 2013
• Acceptance Date: Jun 1, 2013
• Publication Date: Jan 1, 2013
• Peer Reviewed: Peer Reviewed
• Keywords: rheumatoid arthritis, remission, patient perspective
• Public URL: https://uwe-repository.worktribe.com/output/940647
• Publisher URL: http://www.abstracts2view.com/eular/view.php?nu=EULAR13L_FRI0553&terms=
• Additional Information: Title of Conference or Conference Proceedings : EULAR 2013