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酒渣鼻的生活质量评估。欧洲皮肤病与性病学会生活质量与以患者为导向的结局以及痤疮、酒渣鼻和化脓性汗腺炎特别工作组的立场声明。

Quality of life measurement in rosacea. Position statement of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa.

作者信息

Chernyshov P V, Finlay A Y, Tomas-Aragones L, Steinhoff M, Manolache L, Pustisek N, Dessinioti C, Svensson A, Marron S E, Bewley A, Salavastru C, Dréno B, Suru A, Koumaki D, Linder D, Evers A W M, Abeni D, Augustin M, Salek S S, Nassif A, Bettoli V, Szepietowski J С, Zouboulis C C

机构信息

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

Division of Infection and Immunity, School of Medicine, Cardiff University, Cardiff, UK.

出版信息

J Eur Acad Dermatol Venereol. 2023 May;37(5):954-964. doi: 10.1111/jdv.18918. Epub 2023 Feb 6.

Abstract

The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient-Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa (ARHS) do not recommend the use of any generic instrument as a single method of Health Related (HR) QoL assessment in rosacea, except when comparing quimp (quality of life impairment) in rosacea patients with that in other non-dermatologic skin diseases and/or healthy controls. The EADV TFs on QoL and Patient-Oriented Outcomes and ARHS recommend the use of the dermatology-specific HRQoL instrument the Dermatology Life Quality Index (DLQI) and the rosacea-specific HRQoL instrument RosaQoL in rosacea patients. The DLQI minimal clinically important difference may be used as a marker of clinical efficacy of the treatment and DLQI score banding of 0 or 1 corresponding to no effect on patients' HRQoL could be an important treatment goal. This information may be added to consensuses and guidelines for rosacea.

摘要

欧洲皮肤病与性病学会(EADV)生活质量(QoL)与患者导向性结局特别工作组以及痤疮、酒渣鼻和化脓性汗腺炎(ARHS)特别工作组不建议将任何通用工具作为酒渣鼻健康相关(HR)生活质量评估的单一方法,除非用于比较酒渣鼻患者与其他非皮肤科皮肤疾病患者和/或健康对照者的生活质量损害情况。EADV生活质量与患者导向性结局特别工作组以及ARHS特别工作组建议在酒渣鼻患者中使用特定于皮肤科的HRQoL工具——皮肤病生活质量指数(DLQI)以及特定于酒渣鼻的HRQoL工具RosaQoL。DLQI最小临床重要差异可用作治疗临床疗效的标志物,DLQI评分为0或1对应对患者HRQoL无影响,这可能是一个重要的治疗目标。该信息可添加到酒渣鼻的共识和指南中。

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