Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire

Robson, Joanna C; Dawson, Jill; Doll, Helen; Cronholm, Peter; Milman, Nataliya; Kellom, Katherine; Ashdown, Susan; Easley, Ebony; Gebhart, Don; Lanier, Georgia; Mills, John; Peck, Jacqueline; Luqmani, Raashid; Shea, Judy; Tomasson, Gunnar; Merkel, Peter

Abstract

© 2018 Article author(s). Objectives To finalise and validate a disease-specific patient-reported outcome (PRO) measure: The ANCA-associated vasculitis patient-reported outcome (AAV-PRO) questionnaire. Using a 35-item candidate questionnaire developed following 50 qualitative interviews in the UK, USA and Canada, a longitudinal survey was conducted to determine the final scale structure and validate the AAV-PRO. Methods Participants were recruited via Vasculitis UK and the Vasculitis Patient-Powered Research Network. The 35-item candidate questionnaire was completed at baseline and 3 months; UK participants completed the EuroQol-5D-5L (EQ-5D-5L), while US participants completed a test-retest exercise, 3-5 days after baseline. Scale structure was defined using exploratory factor analysis (EFA) and Rasch analysis. Convergent and known groups validity, test-retest reliability and longitudinal construct validity were assessed. Results There were 626 participants with AAV; >25% reporting active disease'. EFA and Rasch analysis supported a 29-item profile measure comprising six domains: organ-specific symptoms', 'systemic symptoms', treatment side effects', 'social and emotional impact', 'concerns about the future' and 'physical function'. Mean domain scores were higher for participants with 'active disease' versus 'remission' (p

• Journal Article Type: Article
• Acceptance Date: Apr 3, 2018
• Online Publication Date: Apr 25, 2018
• Publication Date: Aug 1, 2018
• Deposit Date: Apr 23, 2018
• Publicly Available Date: May 2, 2018
• Journal: Annals of the Rheumatic Diseases
• Print ISSN: 0003-4967
• Electronic ISSN: 1468-2060
• Publisher: BMJ Publishing Group
• Peer Reviewed: Peer Reviewed
• Volume: 77
• Issue: 8
• Pages: 1158-1165
• DOI: https://doi.org/10.1136/annrheumdis-2017-212713
• Keywords: validation, Anca-Associated Vasculitis Patient-Reported Outcomes, AAV-PRO, questionnaire
• Public URL: https://uwe-repository.worktribe.com/output/862131
• Publisher URL: http://dx.doi.org/10.1136/annrheumdis-2017-212713
• Additional Information: Additional Information : This is the author's accepted manuscript. The final published version is available here: http://dx.doi.org/10.1136/annrheumdis-2017-212713.
• Contract Date: Apr 23, 2018