Division of Pulmonary, Critical Care and Sleep Medicine, Brody School of Medicine, East Carolina University, Greenville, North Carolina.
Semin Respir Crit Care Med. 2020 Oct;41(5):716-732. doi: 10.1055/s-0040-1710080. Epub 2020 Jun 24.
Health-related quality of life (HRQoL) describes an individual's perception of the impact of health, disease, and treatment on their quality of life (QoL). It is a reflection of how the manifestation of an illness and its treatment is personally experienced. Assessing HRQoL is particularly important in sarcoidosis because the attributable disease mortality is relatively low, and one of the major reasons for initiating treatment is to improve quality of life. HRQoL has been assessed in sarcoidosis using various generic and sarcoid-specific patient-reported outcome measures (PROMs). It is important that both the direct and indirect effects of the disease, as well as potential toxicities of therapy, are captured in the various PROMs used to assess HRQoL in sarcoidosis. This article provides a general overview of HRQoL in patients with sarcoidosis. It describes the various PROMs used to assess HRQoL in sarcoidosis and addresses the various factors that influence HRQoL in sarcoidosis. Specific attention is paid to fatigue, small fiber neuropathy, corticosteroid therapy, and other disease-specific factors that affect HRQoL in sarcoidosis. It also provides an insight into interventions that have been associated with improved HRQoL in sarcoidosis and offers suggestions for future research in this important area.
健康相关生活质量（HRQoL）描述了个体对健康、疾病和治疗对其生活质量（QoL）的影响的感知。它反映了疾病的表现及其治疗如何在个人身上得到体验。评估 HRQoL 在结节病中尤为重要，因为归因于疾病的死亡率相对较低，并且启动治疗的主要原因之一是改善生活质量。已经使用各种通用和结节病特异性患者报告的结果测量（PROM）来评估结节病中的 HRQoL。重要的是，在用于评估结节病 HRQoL 的各种 PROM 中，要同时捕捉到疾病的直接和间接影响，以及治疗的潜在毒性。本文对结节病患者的 HRQoL 进行了概述。它描述了用于评估结节病 HRQoL 的各种 PROM，并讨论了影响结节病 HRQoL 的各种因素。特别关注疲劳、小纤维神经病、皮质类固醇治疗以及影响结节病 HRQoL 的其他疾病特异性因素。它还深入探讨了与改善结节病 HRQoL 相关的干预措施，并为这一重要领域的未来研究提供了建议。
