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

<h4>Objectives</h4> <p>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 U...

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Main Authors: Robson, J, Dawson, J, Doll, H, Cronholm, P, Milman, N, Kellom, K, Ashdown, S, Easley, E, Gebhart, D, Lanier, G, Mills, J, Peck, J, Luqmani, R, Shea, J, Tomasson, G, Merkel, P
Format: Journal article
Language:English
Published: BMJ Publishing Group 2018
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author Robson, J
Dawson, J
Doll, H
Cronholm, P
Milman, N
Kellom, K
Ashdown, S
Easley, E
Gebhart, D
Lanier, G
Mills, J
Peck, J
Luqmani, R
Shea, J
Tomasson, G
Merkel, P
author_facet Robson, J
Dawson, J
Doll, H
Cronholm, P
Milman, N
Kellom, K
Ashdown, S
Easley, E
Gebhart, D
Lanier, G
Mills, J
Peck, J
Luqmani, R
Shea, J
Tomasson, G
Merkel, P
author_sort Robson, J
collection OXFORD
description <h4>Objectives</h4> <p>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.</p> <h4>Methods</h4> <p>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.</p> <h4>Results</h4> <p>here were 626 participants with AAV; &gt;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&lt;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&lt;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.</p> <h4>Conclusions</h4> <p>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.</p>
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spelling oxford-uuid:bd469833-055b-45eb-828d-184e36b2efaa2022-03-27T05:30:43ZValidation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaireJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:bd469833-055b-45eb-828d-184e36b2efaaEnglishSymplectic Elements at OxfordBMJ Publishing Group2018Robson, JDawson, JDoll, HCronholm, PMilman, NKellom, KAshdown, SEasley, EGebhart, DLanier, GMills, JPeck, JLuqmani, RShea, JTomasson, GMerkel, P <h4>Objectives</h4> <p>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.</p> <h4>Methods</h4> <p>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.</p> <h4>Results</h4> <p>here were 626 participants with AAV; &gt;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&lt;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&lt;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.</p> <h4>Conclusions</h4> <p>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.</p>
spellingShingle Robson, J
Dawson, J
Doll, H
Cronholm, P
Milman, N
Kellom, K
Ashdown, S
Easley, E
Gebhart, D
Lanier, G
Mills, J
Peck, J
Luqmani, R
Shea, J
Tomasson, G
Merkel, P
Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire
title Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire
title_full Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire
title_fullStr Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire
title_full_unstemmed Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire
title_short Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire
title_sort validation of the anca associated vasculitis patient reported outcomes aav pro questionnaire
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