Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure

• Main Authors: Robson JC, Dawson J, Cronholm PF, Milman N, Kellom KS, Ashdown S, Easley E, Farrar JT, Gebhart D, Lanier G, McAlear CA, Peck J, Luqmani RA, Shea JA, Tomasson G, Merkel PA
• Format: Article in Journal/Newspaper
• Language: English
• Published: Dove Medical Press 2018
• Subjects: ANCA-associated vasculitis Quality of Life Patient reported outcomes Granulomatosis with polyangiitis Microscopic polyangiitis Eosinophilic granulomatosis with polyangiiitis; Medicine (General); R5-920; Canada; Gunnar; Iceland
• Online Access: https://doaj.org/article/8e3bc6c8effb45a981067bd95f40da2c

Joanna C Robson,1,2 Jill Dawson,3 Peter F Cronholm,4 Nataliya Milman,5 Katherine S Kellom,6 Susan Ashdown,7 Ebony Easley,8 John T Farrar,9 Don Gebhart,10,11 Georgia Lanier,10,11 Carol A McAlear,12 Jacqueline Peck,7 Raashid A Luqmani,7 Judy A Shea,13 Gunnar Tomasson,14 Peter A Merkel10,11 1Department of Rheumatology, Faculty of Health and Applied Sciences, University of the West of England, Bristol, UK; 2School of Clinical Sciences, University of Bristol, Bristol, UK; 3Department of Population Health (HSRU), University of Oxford, Oxford, UK; 4Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, PA, USA; 5Division of Rheumatology, Department of Medicine, University of Ottawa, Ottawa Hospital Research Institute, Ottawa, ON, Canada; 6PolicyLab, Children’s Hospital of Philadelphia, Philadelphia, PA, USA; 7Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; 8Department of Family Medicine and Community Health, Mixed Methods Research Laboratory, University of Pennsylvania, Philadelphia, PA, USA; 9Biostatistics and Epidemiology, Hospital of the University of Pennsylvania, Philadelphia, PA, USA; 10Division of Rheumatology, Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA; 11Department of Biostatistics and Clinical Epidemiology, University of Pennsylvania, Philadelphia, PA, USA; 12Vasculitis Research, University of Pennsylvania, Philadelphia, PA, USA; 13School of Medicine, University of Pennsylvania, Philadelphia, PA, USA; 14Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland Objective: The antineutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are multisystem diseases of the small blood vessels. Patients experience irreversible damage and psychological effects from AAV and its treatment. An international collaboration was created to investigate the impact of AAV on health-related quality of life (HRQoL), and develop a disease-specific ...