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白癜风患者的生活质量评估。欧洲皮肤病学会和性病学会生活质量和以患者为中心结局工作组的立场声明,并有外部专家参与。

Quality of life measurement in vitiligo. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes with external experts.

机构信息

Department of Dermatology and Venereology, National Medical University, Kiev, Ukraine.

Department of Psychology, University of Zaragoza, Zaragoza, Spain.

出版信息

J Eur Acad Dermatol Venereol. 2023 Jan;37(1):21-31. doi: 10.1111/jdv.18593. Epub 2022 Oct 19.

DOI:10.1111/jdv.18593
PMID:36259656
Abstract

Members of the European Academy of Dermatology and Venereology (EADV) Task Force on Quality of Life (QoL) and Patient Oriented Outcomes reviewed the instruments available for health-related (HR) QoL assessment in vitiligo and together with external vitiligo experts (including representatives of the EADV Vitiligo Task Force) have made practical recommendations concerning the assessment of QoL in vitiligo patients. The Dermatology Life Quality Index (DLQI) was the most frequently used HRQoL instrument, making comparison of results between different countries possible. Several vitiligo-specific instruments were identified. The vitiligo Impact Scale (VIS) is an extensively validated vitiligo-specific HRQoL instrument with proposed minimal important change and clinical interpretation for VIS-22 scores. VIS-22 was developed for use in India, where there are some specific cultural beliefs concerning vitiligo. The EADV Task Force on QoL and Patient Oriented Outcomes recommends use of the DLQI and the Children's Dermatology Life Quality Index (CDLQI) as dermatology-specific instruments in vitiligo. There is a strong need for a valid (including cross-cultural validation) vitiligo-specific instrument that can be either a new instrument or the improvement of existing instruments. This validation must include the proof of responsiveness.

摘要

欧洲皮肤病学会和性病学会(EADV)生活质量(QoL)和患者导向结果工作组的成员审查了可用于评估白癜风患者健康相关(HR)生活质量的工具,并与外部白癜风专家(包括 EADV 白癜风工作组的代表)一起就白癜风患者的生活质量评估提出了实用建议。皮肤病生活质量指数(DLQI)是最常使用的 HRQoL 工具,使不同国家之间的结果比较成为可能。确定了几种专门针对白癜风的工具。白癜风影响量表(VIS)是一种经过广泛验证的专门针对白癜风的 HRQoL 工具,提出了 VIS-22 评分的最小重要变化和临床解释。VIS-22 是为印度开发的,印度对白癜风有一些特定的文化信仰。EADV 生活质量和患者导向结果工作组建议在白癜风中使用 DLQI 和儿童皮肤病生活质量指数(CDLQI)作为皮肤病专用工具。强烈需要一种有效的(包括跨文化验证)专门针对白癜风的工具,可以是新的工具,也可以是改进现有的工具。这种验证必须包括响应能力的证明。

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