Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure
| Autor: | Georgia Lanier, Peter A. Merkel, Peter F. Cronholm, Carol A. McAlear, Katherine Kellom, Susan Ashdown, Jill Dawson, Ebony Easley, Judy A. Shea, Joanna Robson, Raashid Luqmani, Gunnar Tomasson, Don Gebhart, Jacqueline Peck, John T. Farrar, Nataliya Milman |
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| Přispěvatelé: | Læknadeild (HÍ), Faculty of Medicine (UI), Heilbrigðisvísindasvið (HÍ), School of Health Sciences (UI), Háskóli Íslands, University of Iceland |
| Jazyk: | angličtina |
| Rok vydání: | 2018 |
| Předmět: |
Quality of life
medicine.medical_specialty Heilsufar ANCA-Associated Vasculitis Disease Granulomatosis Nonprobability sampling 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Polyangiitis Medicine 030212 general & internal medicine Original Research 030203 arthritis & rheumatology Health related quality of life Patient-reported outcomes microscopic polyangiitis business.industry Blóðsjúkdómar Cognition granuloma-tosis with polyangiitis humanities Patient Related Outcome Measures 3. Good health eosinophilic granulomatosis with polyangiitis quality of life patient-reported outcomes Family medicine Eigindlegar rannsóknir Item generation Patient-reported outcome business ANCA-associated vasculitis Líðan |
| Zdroj: | Patient Related Outcome Measures |
| Popis: | 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 patient-reported outcome measure to assess outcomes of importance to patients. Methods: Patients with AAV from the UK, USA, and Canada were interviewed to identify salient aspects of HRQoL affected by AAV. The study was overseen by a steering committee including four patient research partners. Purposive sampling of interviewees ensured representation of a range of disease manifestations and demographics. Inductive analysis was used to identify themes of importance to patients; these were further confirmed by a free-listing exercise in the US. Individual themes were recast into candidate items, which were scrutinized by patients, piloted through cognitive interviews and received a linguistic and translatability evaluation. Results: Fifty interviews, conducted to saturation, with patients from the UK, USA, and Canada, identified 55 individual themes of interest within seven broad domains: general health perceptions, impact on function, psychological perceptions, social perceptions, social contact, social role, and symptoms. Individual themes were constructed into >100 candidate questionnaire items, which were then reduced and refined to 35 candidate items. Conclusion: This is the largest international qualitative analysis of HRQoL in AAV to date, and the results have underpinned the development of 35 candidate items for a disease-specific, patient-reported outcome questionnaire. Sponsored by the University of Oxford, the Vasculitis Clinical Research Consortium and the University of Ottawa. With support from the Medical Research Fund, Oxford, the Oxfordshire Health Services Research Committee (Ref 1098), the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54 AR057319 and U01 AR51874), the National Center for Research Resources (U54 RR019497), and the Office of Rare Diseases Research. Oxford University Innovation funded the translatability exercise. Additional support received by a Patient-Centred Outcomes Research Institute Pilot Project Grant. |
| Databáze: | OpenAIRE |
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