Department of Health Policy, Medical Technology Research Group, London School of Economics, Houghton Street, WC2A 2AE, England, United Kingdom.
Health Policy. 2019 Feb;123(2):159-165. doi: 10.1016/j.healthpol.2018.12.003. Epub 2018 Dec 14.
In this paper we discuss and present evidence on whether a generic Health Related Quality of Life (HRQoL) measurement tool, the EQ-5D-5L, captures the dimensions of quality of life (QoL) which patients consider significant.
An online survey, of individuals with a chronic condition, mainly breast cancer (BC), blood cancers (BLC), rheumatoid arthritis (RA), asthma, and rare diseases (RD) was conducted to collect data on HRQoL and important QoL aspects that respondents thought were not captured by the EQ-5D-5L. Patient organisations across 47 countries were invited to voluntarily share the survey tool with their membership network.
767 responses from 38 countries showed that important QoL aspects were not captured by EQ-5D-5L for 51% of respondents, including fatigue (19%) and medication side effects (12%), among others. Fatigue (17%) was also the most commonly reported QoL aspect that changed over the course of patients' illness, suggesting that the current version of the EQ-5D-5L might miss capturing significant clinical changes in important QoL domains.
Utilisation of the EQ-5D-5L in HRQoL measurement raises inconsistencies in capturing QoL attributes and changes in disease-specific patient populations. Further research is needed to clarify the extent to which other generic HRQoL measurement tools capture the aspects of health that really matter for patients.
本文讨论并提供了证据，证明通用健康相关生活质量（HRQoL）测量工具 EQ-5D-5L 是否能捕捉到患者认为重要的生活质量（QoL）维度。
我们开展了一项在线调查，对象为患有慢性病的个体，主要包括乳腺癌（BC）、血液癌（BLC）、类风湿关节炎（RA）、哮喘和罕见病（RD）患者，旨在收集与 HRQoL 以及受访者认为 EQ-5D-5L 未捕捉到的重要 QoL 方面相关的数据。我们邀请了 47 个国家的患者组织自愿与他们的会员网络分享调查工具。
来自 38 个国家的 767 份回复显示，EQ-5D-5L 未捕捉到 51%受访者的重要 QoL 方面，包括疲劳（19%）和药物副作用（12%）等。疲劳（17%）也是患者疾病过程中报告变化最多的 QoL 方面，这表明当前版本的 EQ-5D-5L 可能会错过对重要 QoL 领域的重大临床变化的捕捉。
在 HRQoL 测量中使用 EQ-5D-5L 会导致在捕捉 QoL 属性和特定疾病患者群体的变化方面存在不一致。需要进一步研究以明确其他通用 HRQoL 测量工具在多大程度上能捕捉到对患者真正重要的健康方面。
