No abstract

People with RA report not only informational, but also emotional support needs at diagnosis. The potential for delivering emotional support to patients around the time of diagnosis warrants further exploration.

BackgroundGuidelines suggest treatment in rheumatoid arthritis (RA) to target remission, in close consultation with the patient. Our recent qualitative study of the patients' perspective on remission in RA identified 26 domains. The current study aimed to identify a short list of the most important aspects to inform future research.MethodsPatients with RA from the Netherlands, the UK, Austria, Denmark, France and the USA completed a survey that contained all domains identified in our qualitative study. They rated domains for importance (‘not important’, ‘important’ or ‘essential’ to characterise a period of remission) and if important or essential, whether this domain needs to be ‘less’, ‘almost gone’ or ‘gone’ to reflect remission. Respondents were also asked to determine their personal top 3 most important/essential domains. Frequency of specific domains in the top 3 was calculated, and domains were sorted on the percentage of patients that evaluated a particular domain as ‘essential’.ResultsOf 274 respondents, 75% were female, mean (SD) age 57(13) years, disease duration 12(9) years. The top 3 were as follows: pain (67%), fatigue (33%) and independence (19%); domains most frequently rated as ‘essential’ were as follows: pain (60%), being mobile (52%), physical function (51%), being independent (47%) and fatigue (41%). Pain needed to be less (13%), almost gone (42%) or gone (45%) to reflect remission. Similar patterns were seen for fatigue, independence, mobility and physical functioning.ConclusionPatients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission.

ObjectivesThe aim of rheumatoid arthritis (RA) treatment is remission. As treatment should be targeted at outcomes relevant to patients, it is important to understand how patients perceive remission, and to assess whether the current definition of remission adequately reflects these perceptions. The objective of this study is to explore the patient perspective on remission in RA.MethodsNine focus-group discussions in Austria, The Netherlands and UK were conducted, including patients in American College of Rheumatology (ACR)/ European League of Rheumatology (EULAR) remission, self-declared remission and in moderate/high disease activity. Moderators employed a prespecified interview guide helped to engage patients in a discussion on their experience with remission. Inductive thematic analysis was performed within each country, and identified themes were discussed across countries.Results47 RA patients (66% women, disease duration 9 years) participated. Three major themes of patient-perceived remission emerged: (1) symptoms would either be absent or strongly reduced, (2) impact of the disease on daily life would diminish by increased independence, ability to do valued activities, improved mood and ability to cope; (3) leading to a return to normality, including work, family role and perception of others. Patients felt the concept of remission was influenced by ageing, side effects of medication, comorbidities, accrued damage to joints and disease duration. Opinions on duration of state, the role of medication and measurement instruments varied widely.ConclusionsPatients characterise remission by the absence or reduction of symptoms, but more directly by decreased daily impact of their condition and the feeling of a return to normality. The next step is to study whether an additional patient-perceived measure of remission may add value to the ACR/EULAR definition of remission.

The offer to attend a nurse clinic soon after diagnosis allowed RA patients to discuss a wide range of practical and self-management issues. However, most patients also took the opportunity and time to discuss emotional reactions and adaptations to diagnosis. The data suggest an unmet need for emotional support that a nurse clinic might be able to provide.

Progress summarized over 4 years highlights the main methodological challenges discussed within the working group on patient perspective on remission in RA during OMERACT 12.

More evidence on measuring patients' perspective on remission in RA is needed before an informed decision can be made regarding development or modification of remission definitions.

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...