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The patient perspective on absence of disease activity in rheumatoid arthritis: a survey to identify key domains of patient-perceived remission
  1. Lilian H D van Tuyl1,
  2. Martina Sadlonova2,
  3. Sarah Hewlett3,
  4. Bev Davis4,
  5. Caroline Flurey3,
  6. Niti Goel5,
  7. Laure Gossec6,
  8. Cecilie Heegaard Brahe7,
  9. Catherine L Hill8,
  10. Wijnanda Hoogland9,
  11. John Kirwan10,
  12. Merete L Hetland7,
  13. Dirkjan van Schaardenburg1,
  14. Josef S Smolen2,
  15. Tanja Stamm2,
  16. Marieke Voshaar9,
  17. George A Wells11,
  18. Maarten Boers1,12
  1. 1Amsterdam Rheumatology & Immunology Center, Amsterdam, The Netherlands
  2. 2Medical University of Vienna, Vienna, Austria
  3. 3University of the West of England, Bristol, UK
  4. 4Patient Partner, Bristol, UK
  5. 5Quintiles and Duke University School of Medicine, Durham, North Carolina, USA
  6. 6Department of Rheumatology, Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Paris, France
  7. 7Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Rigshospitalet, Glostrup, Denmark
  8. 8University of Adelaide, Adelaide, South Australia, Australia
  9. 9Patient Partner, Amsterdam, The Netherlands
  10. 10University of Bristol, Bristol, UK
  11. 11University of Ottawa, Ottawa, Canada
  12. 12Department of Epidemiology & Biostatistics, VUmc, Amsterdam, The Netherlands
  1. Correspondence to Dr Lilian H D van Tuyl, Department of Rheumatology, VU University Medical Center, 3A56, Amsterdam 1007 MB, The Netherlands; L.vantuyl{at}vumc.nl

Abstract

Background Guidelines 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.

Methods Patients 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’.

Results Of 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.

Conclusion Patients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission.

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Footnotes

  • Handling editor Tore K Kvien

  • Twitter Follow Caroline Flurey at @C_Flurey

  • Funding This work was funded by a grant from EULAR.

  • Competing interests None.

  • Ethics approval Medical Ethical Committees of all involved study sites: VU University Medical Center/Reade in Amsterdam, the Netherlands; Medical University of Vienna, Austria; Bristol Royal Infirmary in Bristol, United Kingdom (UK); Center for Rheumatology and Spine Diseases, Rigshospitalet, Glostrup, Denmark; Université Pierre et Marie Curie and Hopital Pitie-Salpetriere Paris in Paris.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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