The patient perspective on absence of disease activity in rheumatoid arthritis: A survey to identify key domains of patient-perceived remission

Lilian H.D. Van Tuyl*, Martina Sadlonova, Sarah Hewlett, Bev Davis, Caroline Flurey, Niti Goel, Laure Gossec, Cecilie Heegaard Brahe, Catherine L. Hill, Wijnanda Hoogland, John Kirwan, Merete L. Hetland, Dirkjan Van Schaardenburg, Josef S. Smolen, Tanja Stamm, Marieke Voshaar, George A. Wells, Maarten Boers

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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.

Original languageEnglish
Pages (from-to)855-861
Number of pages7
JournalAnnals of the Rheumatic Diseases
Volume76
Issue number5
DOIs
Publication statusPublished - 1 May 2017

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