Systemic vasculitis and patient-reported outcomes: how the assessment of patient preferences and perspectives could improve outcomes

Abstract

Joanna C Robson,1,2 David Jayne,3 Peter A Merkel,4,5 Jill Dawson6 1Faculty of Health and Applied Sciences, University of the West of England, Bristol, UK; 2Faculty of Health and Applied Sciences, University Hospitals Bristol NHS Trust, Bristol, UK; 3Department of Medicine, University of Cambridge, Cambridge, UK; 4Division of Rheumatology, Department of Medicine, 5Department of Biostatistics, Epidemiology, and Informatic, University of Pennsylvania, Philadelphia, PA, USA; 6Nuffield Department of Population Health (HSRU), University of Oxford, Oxford, UK Abstract: The systemic vasculitides are a group of multisystem diseases, which can be life and organ threatening. High-dose immunosuppressants are required to control inflammation in vital organs, such as the kidneys, lungs, skin, joints, and eyes. Patients report a range of impacts on their health-related quality of life due to symptoms, irreversible damage, and the adverse effects of medications. The measurement of patient perspectives within clinical studies in vasculitis is essential to capture outcomes of greatest importance to patients. Validated generic, disease-specific and symptom-specific patient-reported outcomes available for use in patients with systemic vasculitis are reviewed here. Keywords: patient-related outcomes, vasculitis, ANCA-associated vasculitis, large-vessel vasculitis, Behcet’s syndrome, clinical trials

Keywords

• Patient-related outcomes
• vasculitis
• ANCA-associated vasculitis
• large vessel vasculitis
• Behcet’s syndrome
• clinical trials.