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

doi:10.3899/jrheum.181073

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

J Rheumatol. 2019 Oct;46(10):1415-1420. doi: 10.3899/jrheum.181073. Epub 2019 Feb 1.

Authors

Nataliya Milman^{1

2

3}, Eilish McConville^{4

5

6}, Joanna C Robson^{4

5

6}, Annelies Boonen^{4

5

6}, Peter Tugwell^{4

5

6}, George A Wells^{4

5

6}, Dipayan Chaudhuri^{4

5

6}, Jill Dawson^{4

5

6}, Gunnar Tomasson^{4

5

6}, Susan Ashdown^{4

5

6}, Don Gebhart^{4

5

6}, Georgia Lanier^{4

5

6}, Jacqueline Peck^{4

5

6}, Carol A McAlear^{4

5

6}, Katherine S Kellom^{4

5

6}, Peter F Cronholm^{4

5

6}, Peter A Merkel^{4

5

6}

Affiliations

¹ From the 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; School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa Heart Institute, Ottawa, Ontario, Canada; Faculty of Health and Applied Science, University of the West of England; School of Clinical Science, University of Bristol, Bristol; Nuffield Department of Population Health, Health Services Research Unit (HSRU), and Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Department of Medicine, Division of Rheumatology, Maastricht University Medical Centre; Caphri Research Institute, Maastricht University, Maastricht, the Netherlands; Department of Epidemiology and Biostatistics, Faculty of Medicine, University of Iceland; Department of Rheumatology, and Centre for Rheumatology Research, University Hospital, Reykjavik, Iceland; Vasculitis Clinical Research Consortium, and Division of Rheumatology, Department of Medicine, and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, and Department of Family Medicine and Community Health, University of Pennsylvania; PolicyLab, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA. nmilman@toh.ca.
² 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 US 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, and the Office of Rare Diseases Research, each part of the US 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. nmilman@toh.ca.
³ N. Milman, MD, MSc, FRCPC, Assistant Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Clinical Epidemiology Program, Ottawa Hospital Research Institute; E. McConville, MD, Resident, Department of Medicine, University of Ottawa; J.C. Robson, MBBS, PhD, MRCP, Consultant Senior Lecturer in Rheumatology, Faculty of Health and Applied Science, University of the West of England, and School of Clinical Science, University of Bristol; A. Boonen, MD, PhD, Professor, Department of Medicine, Division of Rheumatology, Maastricht University Medical Centre, and Caphri Research Institute, Maastricht University; P. Tugwell, MD, FRCPC, Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa; G.A. Wells, PhD, Professor, School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa Heart Institute; D. Chaudhuri, MD, Resident, Department of Medicine, University of Ottawa; J. Dawson, MA, MSc, DPhil, Visiting Academic Researcher, Nuffield Department of Population Health (HSRU), University of Oxford; G. Tomasson, MD, PhD, Assistant Professor, Department of Epidemiology and Biostatistics, Faculty of Medicine, University of Iceland, and Department of Rheumatology, University Hospital, and Centre for Rheumatology Research, University Hospital; S. Ashdown, Patient Partner, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; D. Gebhart, Patient Partner, Division of Rheumatology, Department of Medicine, and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania; G. Lanier, Patient Partner, Division of Rheumatology, Department of Medicine, and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania; J. Peck, Patient Partner, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; C.A. McAlear, MA, Project Manager, Vasculitis Clinical Research Consortium, and Division of Rheumatology, Department of Medicine, University of Pennsylvania; K.S. Kellom, BA, PolicyLab, Children's Hospital of Philadelphia; P.F. Cronholm, MD, MSCE, Associate Professor, Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania; P.A. Merkel, MD, MPH, Professor, Division of Rheumatology, Department of Medicine, and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania. nmilman@toh.ca.
⁴ From the 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; School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa Heart Institute, Ottawa, Ontario, Canada; Faculty of Health and Applied Science, University of the West of England; School of Clinical Science, University of Bristol, Bristol; Nuffield Department of Population Health, Health Services Research Unit (HSRU), and Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Department of Medicine, Division of Rheumatology, Maastricht University Medical Centre; Caphri Research Institute, Maastricht University, Maastricht, the Netherlands; Department of Epidemiology and Biostatistics, Faculty of Medicine, University of Iceland; Department of Rheumatology, and Centre for Rheumatology Research, University Hospital, Reykjavik, Iceland; Vasculitis Clinical Research Consortium, and Division of Rheumatology, Department of Medicine, and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, and Department of Family Medicine and Community Health, University of Pennsylvania; PolicyLab, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
⁵ 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 US 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, and the Office of Rare Diseases Research, each part of the US 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.
⁶ N. Milman, MD, MSc, FRCPC, Assistant Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Clinical Epidemiology Program, Ottawa Hospital Research Institute; E. McConville, MD, Resident, Department of Medicine, University of Ottawa; J.C. Robson, MBBS, PhD, MRCP, Consultant Senior Lecturer in Rheumatology, Faculty of Health and Applied Science, University of the West of England, and School of Clinical Science, University of Bristol; A. Boonen, MD, PhD, Professor, Department of Medicine, Division of Rheumatology, Maastricht University Medical Centre, and Caphri Research Institute, Maastricht University; P. Tugwell, MD, FRCPC, Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa; G.A. Wells, PhD, Professor, School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa Heart Institute; D. Chaudhuri, MD, Resident, Department of Medicine, University of Ottawa; J. Dawson, MA, MSc, DPhil, Visiting Academic Researcher, Nuffield Department of Population Health (HSRU), University of Oxford; G. Tomasson, MD, PhD, Assistant Professor, Department of Epidemiology and Biostatistics, Faculty of Medicine, University of Iceland, and Department of Rheumatology, University Hospital, and Centre for Rheumatology Research, University Hospital; S. Ashdown, Patient Partner, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; D. Gebhart, Patient Partner, Division of Rheumatology, Department of Medicine, and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania; G. Lanier, Patient Partner, Division of Rheumatology, Department of Medicine, and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania; J. Peck, Patient Partner, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; C.A. McAlear, MA, Project Manager, Vasculitis Clinical Research Consortium, and Division of Rheumatology, Department of Medicine, University of Pennsylvania; K.S. Kellom, BA, PolicyLab, Children's Hospital of Philadelphia; P.F. Cronholm, MD, MSCE, Associate Professor, Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania; P.A. Merkel, MD, MPH, Professor, Division of Rheumatology, Department of Medicine, and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania.

Abstract

Objective: Aspects of antineutrophil cytoplasmic antibodies-associated vasculitis (AAV) prioritized by patients with AAV were described using the International Classification of Function, Disability, and Health (ICF).

Methods: Items identified during 14 individual interviews were incorporated into an ICF-based questionnaire administered to participants of 2 vasculitis patient symposia: 36 in the United Kingdom and 63 in the United States.

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 identified by the current Outcome Measures in Rheumatology (OMERACT) core set and those prioritized by vasculitis experts.

Keywords: OMERACT; OUTCOME ASSESSMENT; VASCULITIS.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis / classification*
Canada
Disability Evaluation*
Disabled Persons
Female
Health Status*
Humans
Male
Middle Aged
Outcome Assessment, Health Care / methods*
Qualitative Research
Rheumatology / methods*
Surveys and Questionnaires
United Kingdom
United States

Abstract

Publication types

MeSH terms

Grants and funding