title: The patient perspective on absence of disease activity in rheumatoid arthritis: a survey to identify key domains of patient-perceived remission.
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.
  
  
  CONCLUSIONS
  Patients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission.
authors.affiliation: Amsterdam Rheumatology & Immunology Center, Amsterdam, The Netherlands.
authors.forename: Lilian H D
authors.identifier: http://orcid.org/0000-0003-4792-895X
authors.initials: LH
authors.lastname: van Tuyl
authors.affiliation: Medical University of Vienna, Vienna, Austria.
authors.forename: Martina
authors.initials: M
authors.lastname: Sadlonova
authors.affiliation: University of the West of England, Bristol, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Hewlett
authors.affiliation: Patient Partner, Bristol, UK.
authors.forename: Bev
authors.initials: B
authors.lastname: Davis
authors.affiliation: University of the West of England, Bristol, UK.
authors.forename: Caroline
authors.initials: C
authors.lastname: Flurey
authors.affiliation: Quintiles and Duke University School of Medicine, Durham, North Carolina, USA.
authors.forename: Niti
authors.initials: N
authors.lastname: Goel
authors.affiliation: Department of Rheumatology, Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Paris, France.
authors.forename: Laure
authors.identifier: http://orcid.org/0000-0002-4528-310X
authors.initials: L
authors.lastname: Gossec
authors.affiliation: Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Rigshospitalet, Glostrup, Denmark.
authors.forename: Cecilie
authors.initials: C
authors.lastname: Heegaard Brahe
authors.affiliation: University of Adelaide, Adelaide, South Australia, Australia.
authors.forename: Catherine L
authors.initials: CL
authors.lastname: Hill
authors.affiliation: Patient Partner, Amsterdam, The Netherlands.
authors.forename: Wijnanda
authors.initials: W
authors.lastname: Hoogland
authors.affiliation: University of Bristol, Bristol, UK.
authors.forename: John
authors.initials: J
authors.lastname: Kirwan
authors.affiliation: Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Rigshospitalet, Glostrup, Denmark.
authors.forename: Merete L
authors.initials: ML
authors.lastname: Hetland
authors.affiliation: Amsterdam Rheumatology & Immunology Center, Amsterdam, The Netherlands.
authors.forename: Dirkjan
authors.initials: D
authors.lastname: van Schaardenburg
authors.affiliation: Medical University of Vienna, Vienna, Austria.
authors.forename: Josef S
authors.identifier: http://orcid.org/0000-0002-8899-9087
authors.initials: JS
authors.lastname: Smolen
authors.affiliation: Medical University of Vienna, Vienna, Austria.
authors.forename: Tanja
authors.initials: T
authors.lastname: Stamm
authors.affiliation: Patient Partner, Amsterdam, The Netherlands.
authors.forename: Marieke
authors.initials: M
authors.lastname: Voshaar
authors.affiliation: University of Ottawa, Ottawa, Canada.
authors.forename: George A
authors.initials: GA
authors.lastname: Wells
authors.affiliation: Amsterdam Rheumatology & Immunology Center, Amsterdam, The Netherlands.|Department of Epidemiology & Biostatistics, VUmc, Amsterdam, The Netherlands.
authors.forename: Maarten
authors.initials: M
authors.lastname: Boers
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D001172:Arthritis, Rheumatoid / Q000188:drug therapy / Q000523:psychology*; D001294:Attitude to Health; D059026:Diagnostic Self Evaluation; D005221:Fatigue / Q000209:etiology* / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000209:etiology* / Q000523:psychology; D063868:Patient Outcome Assessment; D036301:Qualitative Research; D012074:Remission Induction; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
keywords: Outcomes research; Patient perspective; Rheumatoid Arthritis