FRI0553 “back to being normal”: the patient perspective on remission in rheumatoid arthritis

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. Disclosure of Interest L. Van Tuyl Grant/research support from: EULAR, S. Hewlett: None Declared, T. Stamm: None Declared, B. Davis: None Declared, C. Flurey: None Declared, W. Hoogland: None Declared, J. Kirwan: None Declared, T. Sanderson: None Declared, M. Sadlonova: None Declared, D. van Schaardenburg: None Declared, M. Scholte-Voshaar: No...

Measurement of stiffness in patients with rheumatoid arthritis in low disease activity or remission: a systematic review

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Considerations and priorities for incorporating the patient perspective on remission in rheumatoid arthritis: An OMERACT 2020 special interest group report

“…The duration of reduced or no symptoms was also raised by PRPs as important in defining remission. The existing criteria do not have specific requirements on time, and it was clarified that there was no agreement among patients in the initial focus groups regarding how long the RA symptoms would need to be absent for it to be considered RA remission (Van Tuyl et al, 2013), therefore duration was not taken forward into further studies by this WG. Further research may be needed to reach consensus on a minimum clinically relevant duration of no symptoms:…”

“…First, qualitative focus groups were conducted to identify what remission ("disease activity as good as gone") meant to people with RA (Van Tuyl et al, 2013).…”

Remission in Rheumatoid Arthritis: Working Toward Incorporation of the Patient Perspective at OMERACT 12

“…Qualitative exploration. To understand the patient perspective on periods of remission, we undertook a qualitative study 12 . In 3 European countries (Austria, United Kingdom, and the Netherlands), focus group discussions were organized with patients with RA.…”

“…From these discussions, 26 aspects of remission were identified and grouped into 3 major themes of patient-perceived remission (Figure 1). For elaboration on the different items and grouping into themes, we refer to this work 12 . Rating for importance.…”