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在皮肤病学研究和实践中测量健康相关的生活质量:EADV 生活质量工作组的成果。

Measurement of health-related quality of life in dermatological research and practice: outcome of the EADV Taskforce on Quality of Life.

机构信息

Department of Dermatology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.

出版信息

J Eur Acad Dermatol Venereol. 2013 Oct;27(10):1195-203. doi: 10.1111/jdv.12090. Epub 2013 Jan 9.

Abstract

In the last decade, the importance of the measurement of health-related quality of life (HRQoL) has grown significantly. Today, HRQoL measurement is generally considered to be important in clinical trials, in the assessment of disease severity, in patient management and in the field of health economics. Therefore, a good understanding of the concept of HRQoL and its measurement instruments is a prerequisite for both researchers and clinicians. The European Academy for Dermatology and Venereology (EADV) Taskforce on Quality of Life encourages the application of HRQoL instruments in research and clinical practice, and with this manuscript, the Taskforce aims to contribute to the quality of this application. In dermatology, a large number of HRQoL instruments exist and herewith, we summarize the most commonly used generic and dermatology-specific HRQoL instruments. Information is given on the most important psychometric characteristics of these instruments, including: scale structure, reliability, validity and responsiveness. Furthermore, a flow chart is provided to support researchers and clinicians in selecting an existing instrument or, in case an appropriate instrument does not exist, in finding alternative solutions. The present manuscript is the first of a series of manuscripts to be written on behalf of the EADV Taskforce on Quality of Life, aiming to contribute to the scientific knowledge and measurement of patient reported outcomes in dermatological research and practice.

摘要

在过去的十年中,健康相关生活质量(HRQoL)的测量重要性显著增加。如今,HRQoL 测量通常被认为在临床试验、疾病严重程度评估、患者管理和卫生经济学领域很重要。因此,对 HRQoL 的概念及其测量工具的良好理解是研究人员和临床医生的前提。欧洲皮肤病学和性病学会(EADV)生活质量工作组鼓励在研究和临床实践中应用 HRQoL 工具,本手稿旨在为此应用做出贡献。在皮肤病学中,存在大量的 HRQoL 工具,我们在此总结了最常用的通用和皮肤病学特定的 HRQoL 工具。提供了有关这些工具最重要的心理测量特征的信息,包括:量表结构、信度、效度和反应度。此外,还提供了一个流程图,以支持研究人员和临床医生选择现有工具,或者在没有合适工具的情况下,寻找替代解决方案。本手稿是代表 EADV 生活质量工作组撰写的一系列手稿中的第一篇,旨在为皮肤病学研究和实践中的患者报告结局的科学知识和测量做出贡献。

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