Robson Joanna C, Jayne David, Merkel Peter A, Dawson Jill
Faculty of Health and Applied Sciences, University of the West of England, Bristol, UK,
Faculty of Health and Applied Sciences, University Hospitals Bristol NHS Trust, Bristol, UK,
Patient Relat Outcome Meas. 2019 Feb 8;10:37-42. doi: 10.2147/PROM.S163601. eCollection 2019.
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.
系统性血管炎是一组多系统疾病，可危及生命和器官。需要使用高剂量免疫抑制剂来控制重要器官（如肾脏、肺、皮肤、关节和眼睛）的炎症。患者报告称，由于症状、不可逆转的损害以及药物的不良反应，他们的健康相关生活质量受到了一系列影响。在血管炎临床研究中衡量患者的观点对于获取对患者最重要的结果至关重要。本文综述了可用于系统性血管炎患者的经过验证的通用、疾病特异性和症状特异性患者报告结局。
