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

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Robson JC#1,2, Dawson J#3, Doll H4, Cronholm PF5, Milman N6, Kellom K7, Ashdown S8, Easley E9, Gebhart D10, Lanier G11, Mills J12, Peck J8, Luqmani RA13, Shea J14, Tomasson G15, Merkel PA16. Ann Rheum Dis. 2018 Apr 25. pii: annrheumdis-2017-212713. doi: 10.1136/annrheumdis-2017-212713. [Epub ahead of print]

Abstract

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1 Faculty of Health and Applied Sciences, University of the West of England, Bristol, UK.

2 University of Bristol School of Clinical Science, Bristol, UK.

3 University of Oxford, Nuffield Department of Population Health (HSRU), Oxford, UK.

4 Oxford Outcomes UK, Oxford, UK.

5 University of Pennsylvania Perelman School of Medicine, Department of Family Medicine and Community Health, Philadelphia, Pennsylvania, USA.

6 Division of Rheumatology, Department of Medicine in Ottawa, Ottawa, Ontario, Canada.

7 Children's Hospital of Philadelphia, PolicyLab, Philadelphia, Pennsylvania, USA.

8 Patient Partner, Oxford, UK.

9 University of Pennsylvania, Department of Family Medicine and Community Health, Philadelphia, USA.

10 Patient Partner, Columbus, Ohio, USA.

11 Patient Partner, Boston, Massachusetts, USA.

12 West Bank House, Vasculitis UK, Matlock, UK.

13 Nuffield Department of Orthopaedicx, Rheumatology and Musculoskeletal Science (NDORMs), University of Oxford, Oxford, UK.

14 Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

15 University of Iceland, Reykjavik, Iceland.

16 Department of Rheumatology, University of Pennsylvania, Philadelphia, Massachusetts, USA.

# Contributed equally

Abstract

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<0.001). Construct validity was demonstrated by correlations between domain scores and the EQ-5D-5L (range r=-0.55 to 0.78), all p<0.0001. In participants reporting 'no change' (n=97) during the test-retest, intraclass correlation coefficient values were high (range 0.89-0.96) for each domain.

CONCLUSIONS: The AAV-PRO, a new disease-specific PRO measure for AAV, has good face and construct validity, is reliable, feasible and discriminates among disease states.