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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

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Jo Robson
Consultant Associate Professor in Rheumatology

Jill Dawson

Helen Doll

Peter Cronholm

Nataliya Milman

Katherine Kellom

Susan Ashdown

Ebony Easley

Don Gebhart

Georgia Lanier

John Mills

Jacqueline Peck

Raashid Luqmani

Judy Shea

Gunnar Tomasson

Peter Merkel


© 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


Robson, J. C., Dawson, J., Doll, H., Cronholm, P., Milman, N., Kellom, K., …Merkel, P. (2018). Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire. Annals of the Rheumatic Diseases, 77(8), 1158-1165.

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
Keywords validation, Anca-Associated Vasculitis Patient-Reported Outcomes, AAV-PRO, questionnaire
Public URL
Publisher URL
Additional Information Additional Information : This is the author's accepted manuscript. The final published version is available here:


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