title: The development and initial validation of a questionnaire to measure help-seeking behaviour in patients with new onset rheumatoid arthritis.
abstract: BACKGROUND
  Early treatment for rheumatoid arthritis (RA) is vital. However, people often delay in seeking help at symptom onset. An assessment of the reasons behind patient delay is necessary to develop interventions to promote rapid consultation.
  
  
  OBJECTIVE
  Using a mixed methods design, we aimed to develop and test a questionnaire to assess the barriers to help seeking at RA onset.
  
  
  METHODS
  Questionnaire items were extracted from previous qualitative studies. Fifteen people with a lived experience of arthritis participated in focus groups to enhance the questionnaire's face validity. The questionnaire was also reviewed by groups of multidisciplinary health-care professionals. A test-retest survey of 41 patients with newly presenting RA or unclassified arthritis assessed the questionnaire items' intraclass correlations.
  
  
  RESULTS
  During focus groups, participants rephrased questions, added questions and deleted items not relevant to the questionnaire's aims. Participants organized items into themes: early symptom experience, initial reactions to symptoms, self-management behaviours, causal beliefs, involvement of significant others, pre-diagnosis knowledge about RA, direct barriers to seeking help and relationship with GP. The test-retest survey identified seven items (out of 79) with low intraclass correlations which were removed from the final questionnaire.
  
  
  CONCLUSIONS
  The involvement of people with a lived experience of arthritis and multidisciplinary health-care professionals in the preliminary validation of the DELAY (delays in evaluating arthritis early) questionnaire has enriched its development. Preliminary assessment established its reliability. The DELAY questionnaire provides a tool for researchers to evaluate individual, cultural and health service barriers to help-seeking behaviour at RA onset.
authors.affiliation: Centre for Translational Inflammation Research, School of Infection and Immunity, University of Birmingham, Birmingham, UK.|Department of Rheumatology, Sandwell & West Birmingham Hospitals NHS Trust, Birmingham, UK.
authors.forename: Rebecca J
authors.initials: RJ
authors.lastname: Stack
authors.affiliation: Arthritis Research UK Primary Care Centre, Keele University, Staffs, UK.
authors.forename: Christian D
authors.initials: CD
authors.lastname: Mallen
authors.affiliation: Department of Rheumatology, Derby Hospitals NHS Foundation Trust, Derby, UK.
authors.forename: Chris
authors.initials: C
authors.lastname: Deighton
authors.affiliation: Department of Rheumatology, St Georges Healthcare Trust, London, UK.
authors.forename: Patrick
authors.initials: P
authors.lastname: Kiely
authors.affiliation: School of Health and Population Sciences, University of Birmingham, Birmingham, UK.
authors.forename: Karen L
authors.initials: KL
authors.lastname: Shaw
authors.affiliation: Department of Rheumatology, Derby Hospitals NHS Foundation Trust, Derby, UK.
authors.forename: Alison
authors.initials: A
authors.lastname: Booth
authors.affiliation: Centre for Translational Inflammation Research, School of Infection and Immunity, University of Birmingham, Birmingham, UK.|Department of Rheumatology, Sandwell & West Birmingham Hospitals NHS Trust, Birmingham, UK.
authors.forename: Kanta
authors.initials: K
authors.lastname: Kumar
authors.affiliation: Department of Rheumatology, Sandwell & West Birmingham Hospitals NHS Trust, Birmingham, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Thomas
authors.affiliation: Department of Rheumatology, Sandwell & West Birmingham Hospitals NHS Trust, Birmingham, UK.
authors.forename: Ian
authors.initials: I
authors.lastname: Rowan
authors.affiliation: School of Pharmacy, University of London, London, UK.
authors.forename: Rob
authors.initials: R
authors.lastname: Horne
authors.affiliation: Wolfson Computer Laboratory, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
authors.forename: Peter
authors.initials: P
authors.lastname: Nightingale
authors.affiliation: Faculty of Health and Social Care, The Open University, Milton Keynes, UK.
authors.forename: Sandy
authors.initials: S
authors.lastname: Herron-Marx
authors.affiliation: Arthritis Research UK Primary Care Centre, Keele University, Staffs, UK.
authors.forename: Clare
authors.initials: C
authors.lastname: Jinks
authors.affiliation: Centre for Translational Inflammation Research, School of Infection and Immunity, University of Birmingham, Birmingham, UK.|Department of Rheumatology, Sandwell & West Birmingham Hospitals NHS Trust, Birmingham, UK.
authors.forename: Karim
authors.initials: K
authors.lastname: Raza
mesh_terms: D000328:Adult; D000368:Aged; D001172:Arthritis, Rheumatoid / Q000175:diagnosis / Q000628:therapy; D005260:Female; D000066505:Help-Seeking Behavior; D006801:Humans; D008297:Male; D010342:Patient Acceptance of Health Care; D036301:Qualitative Research; D012017:Referral and Consultation; D015203:Reproducibility of Results; D012648:Self Care; D011795:Surveys and Questionnaires
keywords: delay in accessing health services; face validity; patient involvement; questionnaire development; rheumatoid arthritis; test-retest reliability