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The patient perspective on remission in rheumatoid arthritis: ‘You've got limits, but you're back to being you again’
  1. Lilian H D van Tuyl1,
  2. Sarah Hewlett2,
  3. Martina Sadlonova3,
  4. Bev Davis4,
  5. Caroline Flurey2,
  6. Wijnanda Hoogland1,
  7. John Kirwan5,
  8. Tessa Sanderson2,
  9. Dirkjan van Schaardenburg6,
  10. Marieke Scholte-Voshaar1,
  11. Josef Smolen3,
  12. Tanja Stamm3,
  13. Maarten Boers7
  1. 1Department of Rheumatology, VU University Medical Center, Amsterdam, The Netherlands
  2. 2Nursing and Midwifery, University of the West of England, Bristol, UK
  3. 3Division of Rheumatology, Department of Medicine, Medical University of Vienna, Vienna, Austria
  4. 4Bristol Royal Infirmary, Bristol, UK
  5. 5Academic Rheumatology Unit, University of Bristol, Bristol, UK
  6. 6Jan van Breemen Research Institute | Reade, Amsterdam, The Netherlands
  7. 7Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, The Netherlands
  1. Correspondence to Dr Lilian HD van Tuyl, Department of Rheumatology, VU University Medical Center, 3A56, Amsterdam 1007 MB, The Netherlands; L.vantuyl{at}vumc.nl

Abstract

Objectives The 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.

Methods Nine 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.

Results 47 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.

Conclusions Patients 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.

  • Rheumatoid Arthritis
  • Qualitative Research
  • Outcomes Research
  • Patient Perspective

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