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Updating OMERACT Core Set of Domains for ANCA-Associated Vasculitis: Patient Perspective Using the International Classification of Function, Disability and Health

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Milman N1, McConville E1, Robson JC1, Boonen A1, Tugwell P1, Wells GA1, Chaudhuri D1, Dawson J1, Tomasson G1, Ashdown S1, Gebhart D1, Lanier G1, Peck J1, McAlear CA1, Kellom KS1, Cronholm PF1, Merkel PA1. J Rheumatol. 2019 Feb 1. pii: jrheum.181073. doi: 10.3899/jrheum.181073. [Epub ahead of print]


Author information 1 Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Department of Medicine, University of Ottawa / the Ottawa Hospital, Ottawa, Ontario, Canada; Faculty of Health and Applied Science, University of the West of England, Bristol, UK; School of Clinical Science, University of Bristol, Bristol, UK; Maastricht University Medical Centre, Maastricht, the Netherlands; Caphri Research Institute, Maastricht University, Maastricht, The Netherlands; School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa Heart Institute, Ottawa, Ontario, Canada; Nuffield Department of Population Health (HSRU), University of Oxford, Oxford, UK; Department of Epidemiology and Biostatistics, Faculty of Medicine, University of Iceland, Reykjavik, Iceland; Department of Rheumatology, University Hospital, Reykjavik, Iceland; Centre for Rheumatology Research, University Hospital, Reykjavik, Iceland; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA; Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, PolicyLab, Children's Hospital of Philadelphia, 2716 South St, Philadelphia, PA 19146, USA; Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, PA, USA. The VasculitisClinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the VasculitisClinical Research Consortium, which received support from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (grants U54-AR-057319 and U01-AR-51874 04), the National Center for Research Resources (grant U54-RR-019497), the National Center for Advancing Translational Science, the Office of Rare Diseases Research, each part of the United States National Institutes of Health (NIH). The VCRC is a member of the NIH Rare Diseases Clinical Research Network. The VCRC also received a Pilot award from the Patient-Centered Outcomes Research Institute. Dr. Milman's work was supported by a postgraduate Rheumatology Fellowship award given jointly by UCB Pharma, the Canadian Rheumatology Association, and The Arthritis Society, and a Fellowship from the Ottawa Hospital Department of Medicine. This work was further supported by a Vasculitis Foundation Research Grant. Address correspondence to Nataliya Milman, The Ottawa Hospital, Riverside Campus, 1967 Riverside Drive, Ottawa, ON K1H7W9, Canada. Email: nmilman@toh.ca.


OBJECTIVE: Aspects of ANCA-associated vasculitis (AAV) prioritized by patients with AAV were described using the International Classification of Function, Disability, and Health.

METHODS: Items identified during 14 individual interviews were incorporated into ICF-based questionnaire administered to participants of 2 vasculitis patient symposia, 36 in UK and 63 in USA.

RESULTS: Categories identified as at least "moderately relevant" by ≥ 5% of subjects included 44 body functions, 14 body structures, 35 activities and participation, 31 environmental factors, and 38 personal factors.

CONCLUSION: Identified categories differ from those captured by the current OMERACT core set and those prioritized by vasculitisexperts.