1. Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire
- Author
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Peter F. Cronholm, John Mills, Jacqueline Peck, Susan Ashdown, Raashid Luqmani, Gunnar Tomasson, Ebony Easley, Peter A. Merkel, Nataliya Milman, Jill Dawson, Judy A. Shea, Joanna Robson, Katherine Kellom, Helen Doll, Georgia Lanier, and Don Gebhart
- Subjects
Adult ,Male ,medicine.medical_specialty ,Canada ,Immunology ,ANCA-Associated Vasculitis ,Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis ,Disease ,General Biochemistry, Genetics and Molecular Biology ,Article ,03 medical and health sciences ,Young Adult ,0302 clinical medicine ,Rheumatology ,Surveys and Questionnaires ,medicine ,Immunology and Allergy ,Humans ,030212 general & internal medicine ,Longitudinal Studies ,Patient Reported Outcome Measures ,Aged ,030203 arthritis & rheumatology ,Rasch model ,business.industry ,Remission Induction ,Construct validity ,Reproducibility of Results ,Middle Aged ,medicine.disease ,Exploratory factor analysis ,United Kingdom ,United States ,Socioeconomic Factors ,Physical therapy ,Quality of Life ,Feasibility Studies ,Female ,Outcomes research ,business ,Vasculitis ,Systemic vasculitis - Abstract
Objectives o 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 here 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 Conclusions he AAV-PRO, a new disease-specific PRO measure for AAV, has good face and construct validity, is reliable, feasible and discriminates among disease states.
- Published
- 2017