title: Expectations of new treatment in rheumatoid arthritis: developing a patient-generated questionnaire.
abstract: BACKGROUND
  Service-user partnerships in research exist in mental health, but there have been few advances in other disciplines, apart from cancer.
  
  
  OBJECTIVE
  To develop a patient-generated expectancy measure for new treatments in rheumatoid arthritis (RA), using a participatory method.
  
  
  METHODS
  Stage 1: three repeated focus groups and two expert panels with patients with RA conducted by a patient researcher to generate items for the draft questionnaire. Stage 2: feasibility study of draft scale with consecutive outpatient attendees.
  
  
  RESULTS
  Patients identified 21 dimensions of new treatment expectations, grouped into (i) physical, (ii) psycho-social and (iii) expectations relating to the impact of treatment. This resulted in a draft instrument assessed in a feasibility study.
  
  
  CONCLUSIONS
  The participatory research method was useful in involving patients actively in research and to produce collaboratively a feasible, valid and acceptable measure in RA. The scale will be included in a longitudinal observational study, with newly diagnosed patients, to assess (i) whether the new scale demonstrates sensitivity to change for expectations when receiving new treatment and (ii) participants' completion rate of the new scale compared with five instruments included in the future study.
authors.affiliation: Department of Rheumatology, King's College Hospital NHS Foundation Trust, London, UK.
authors.forename: Darija
authors.initials: D
authors.lastname: Hofmann
authors.affiliation: Academic Department of Rheumatology, King's College London, London, UK.
authors.forename: Fowzia
authors.initials: F
authors.lastname: Ibrahim
authors.affiliation: Institute of Psychiatry, King's College London, London, UK.
authors.forename: Diana
authors.initials: D
authors.lastname: Rose
authors.affiliation: Academic Department of Rheumatology, King's College London, London, UK.
authors.forename: David L
authors.initials: DL
authors.lastname: Scott
authors.affiliation: Academic Department of Rheumatology, King's College London, London, UK.
authors.forename: Andrew
authors.initials: A
authors.lastname: Cope
authors.affiliation: Institute of Psychiatry, King's College London, London, UK.
authors.forename: Til
authors.initials: T
authors.lastname: Wykes
authors.affiliation: Academic Department of Rheumatology, King's College London, London, UK.
authors.forename: Heidi
authors.initials: H
authors.lastname: Lempp
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001172:Arthritis, Rheumatoid / Q000188:drug therapy*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation / Q000379:methods*; D011795:Surveys and Questionnaires; D035703:Therapies, Investigational; D055815:Young Adult
keywords: patient involvement in research; qualitative; rheumatoid arthritis