Centre for Health and Clinical Research, University of the West of England, Bristol, UK.
Rheumatology Department, University Hospitals Bristol and Weston NHF Foundation Trust, Bristol, UK.
Curr Rheumatol Rep. 2021 Jan 28;23(2):7. doi: 10.1007/s11926-020-00979-4.
The goal of this paper is to review current and future uses of patient-reported outcomes in large vessel vasculitis. The large vessel vasculitides comprise Giant Cell Arteritis and Takayasu arteritis; both are types of systemic vasculitis which affect the larger blood vessels. Patient-reported outcomes (PROs) capture the impact of these diseases on health-related quality of life.
Generic PROs such as the SF-36 are currently used to compare HRQOL of people with GCA and TAK within clinical trials and observational studies and to make comparisons with the general population and HRQoL in other diseases. The development of a disease-specific PRO for GCA is currently underway. Beyond clinical trials, there is much interest in the use of PROs within routine clinical care, particularly E-PROs for remote use. Further work will be needed to complete the development of disease-specific PROs for people with large vessel vasculitis and to establish feasibility, acceptability, and utility of E-PROs.
本文旨在回顾患者报告结局在巨细胞动脉炎和 Takayasu 动脉炎中的当前和未来应用。大血管血管炎包括巨细胞动脉炎和 Takayasu 动脉炎；两者均为系统性血管炎，影响较大的血管。患者报告结局（PROs）可反映这些疾病对健康相关生活质量的影响。
目前，通用 PROs，如 SF-36，用于在临床试验和观察性研究中比较 GCA 和 TAK 患者的 HRQOL，并与普通人群和其他疾病的 HRQoL 进行比较。目前正在为 GCA 开发一种疾病特异性 PRO。除临床试验外，人们对在常规临床护理中使用 PROs 非常感兴趣，特别是用于远程使用的电子 PROs。还需要进一步的工作来完成大血管血管炎患者疾病特异性 PROs 的开发，并确定电子 PROs 的可行性、可接受性和实用性。
