Research ArticleAccepted Article
Updating OMERACT Core Set of Domains for ANCA-Associated Vasculitis: Patient Perspective Using the International Classification of Function, Disability and Health
Nataliya Milman, Eilish McConville, Joanna C. Robson, Annelies Boonen, Peter Tugwell, George A. Wells, Dipayan Chaudhuri, Jill Dawson, Gunnar Tomasson, Susan Ashdown, Don Gebhart, Georgia Lanier, Jacqueline Peck, Carol A. McAlear, Katherine S. Kellom, Peter F. Cronholm and Peter A. Merkel
The Journal of Rheumatology February 2019, jrheum.181073; DOI: https://doi.org/10.3899/jrheum.181073
Nataliya Milman
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Eilish McConville
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Joanna C. Robson
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Annelies Boonen
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Peter Tugwell
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
George A. Wells
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Dipayan Chaudhuri
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Jill Dawson
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Gunnar Tomasson
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Susan Ashdown
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Don Gebhart
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Georgia Lanier
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Jacqueline Peck
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Carol A. McAlear
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Katherine S. Kellom
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Peter F. Cronholm
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Peter A. Merkel
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 Vasculitis Clinical Research Consortium (VCRC) Outcome Measures in Rheumatology Vasculitis Working Group was supported by the Vasculitis Clinical 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
Abstract
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 vasculitis experts.
In this issue
The Journal of Rheumatology
Vol. 51, Issue 4
1 Apr 2024
Accepted manuscript
Updating OMERACT Core Set of Domains for ANCA-Associated Vasculitis: Patient Perspective Using the International Classification of Function, Disability and Health
Nataliya Milman, Eilish McConville, Joanna C. Robson, Annelies Boonen, Peter Tugwell, George A. Wells, Dipayan Chaudhuri, Jill Dawson, Gunnar Tomasson, Susan Ashdown, Don Gebhart, Georgia Lanier, Jacqueline Peck, Carol A. McAlear, Katherine S. Kellom, Peter F. Cronholm, Peter A. Merkel
The Journal of Rheumatology Feb 2019, jrheum.181073; DOI: 10.3899/jrheum.181073
Accepted manuscript
Updating OMERACT Core Set of Domains for ANCA-Associated Vasculitis: Patient Perspective Using the International Classification of Function, Disability and Health
Nataliya Milman, Eilish McConville, Joanna C. Robson, Annelies Boonen, Peter Tugwell, George A. Wells, Dipayan Chaudhuri, Jill Dawson, Gunnar Tomasson, Susan Ashdown, Don Gebhart, Georgia Lanier, Jacqueline Peck, Carol A. McAlear, Katherine S. Kellom, Peter F. Cronholm, Peter A. Merkel
The Journal of Rheumatology Feb 2019, jrheum.181073; DOI: 10.3899/jrheum.181073