Faculty of Health and Medicine, University of Lancaster, UK.
Department of Basic Sciences, School of Medicine and Health Sciences, Universitat Internacional de Catalunya (UIC), Barcelona, Spain.
Best Pract Res Clin Endocrinol Metab. 2021 Jan;35(1):101505. doi: 10.1016/j.beem.2021.101505. Epub 2021 Feb 17.
Measurement of Health-Related Quality of Life (HRQoL) is emerging as an important clinical endpoint which complements diagnostic workup and contributes to place patients at the centre of the decision-making process through the recognition of their needs, concerns, goals and expectations. Chronic excessive cortisol exposure in Cushing's syndrome (CS) causes severe physical and psychological morbidity which invariably affects HRQoL during the active phase of the disease and even after successful treatment. This sustained deterioration of patient's wellbeing is partly related to the persistence of several features associated with prior cortisol excess, including affective disorders, cognitive dysfunctions and negative illness perception. The aim of this review is to summarize the most recent evidence on HRQoL in CS, including the main determinants of its impairment and the results of some educational programs specifically addressed to improve patient's coping abilities. The preliminary results of an unpublished survey on patient's unmet needs will also be presented.
健康相关生活质量（HRQoL）的测量正在成为一个重要的临床终点，它补充了诊断工作，并通过认识患者的需求、关注点、目标和期望，将患者置于决策过程的中心。库欣综合征（CS）中慢性过量皮质醇暴露会导致严重的身体和心理发病率，这不可避免地会在疾病的活动期甚至在成功治疗后影响 HRQoL。患者健康状况的持续恶化部分与与先前皮质醇过多相关的几个特征的持续存在有关，包括情感障碍、认知功能障碍和对疾病的负面认知。本综述的目的是总结 CS 中 HRQoL 的最新证据，包括其受损的主要决定因素，以及一些专门旨在提高患者应对能力的教育计划的结果。还将介绍一项关于患者未满足需求的未发表调查的初步结果。
