Supplementary Material for: Which Health-Related Quality of Life Items Most Affect Acne Patients?

Background: Health-related quality of life (HRQoL) assessment in patients with acne is recommended by several national guidelines. There are several acne-specific HRQoL instruments. Objectives: Participants of the European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on QoL and Patient Oriented Outcomes (PO) and Acne, Rosacea, and Hidradenitis Suppurativa (ARHS) agreed to scrutinize aspects of existing acne-specific HRQoL instruments for their relevance in international study. Methods: Consensus agreement on items related to QoL was reached after an independent assessment by seven experts from the EADV TFs on QoL and PO, and a list of 97 items was prepared and proposed to a group of acne patients. In order to have data from patients to check if any important topics were overseen, another group of acne patients from participating countries was asked to list how acne influenced different aspects of their lives. Results: Based on results obtained from 601 acne patients from nine countries, most of the items and topics showed low relevance for acne patients especially during the previous month or shorter time periods. Based on percentage of relevance and factor analysis, short (6 items) and long (45 items) lists of the most relevant topics were formed. Conclusion: Most of the items and topics from the initial list showed low relevance for acne patients. None of the identified acne-specific HRQoL instruments contain all the items that were deemed most relevant to acne patients. For this reason, participating members of the EADV TFs on QoL and PO, and ARHs are in the process of developing a new acne-specific HRQoL instrument.

背景：多项国家级指南推荐对痤疮患者开展健康相关生活质量（Health-related quality of life, HRQoL）评估，目前已有多款痤疮专属健康相关生活质量评估工具。
目标：欧洲皮肤病与性病学会（European Academy of Dermatology and Venereology, EADV）下属生活质量与患者导向结局（QoL and Patient Oriented Outcomes, PO）工作组、痤疮/玫瑰痤疮与化脓性汗腺炎（Acne, Rosacea, and Hidradenitis Suppurativa, ARHS）工作组的成员一致同意，对现有痤疮专属健康相关生活质量评估工具的相关维度开展评估，以明确其在国际研究中的适用性。
方法：由EADV生活质量与患者导向结局工作组的7位专家开展独立评估，就与生活质量相关的条目达成共识，最终拟定包含97个条目的清单并提交给一组痤疮患者评审。为收集患者数据以排查是否存在重要主题被遗漏的情况，另邀请来自参与国的痤疮患者列出痤疮对其生活各方面的影响。
结果：基于来自9个国家的601名痤疮患者的调研数据，多数条目与主题与痤疮患者的相关性较低，尤其是在近1个月及更短时间范围内。结合相关性占比与因子分析结果，最终形成了包含6个条目的短版本与45个条目的长版本核心相关主题清单。
结论：初始清单中的多数条目与主题与痤疮患者的相关性较低。现有已明确的痤疮专属健康相关生活质量评估工具均未覆盖所有被认定为与痤疮患者最相关的条目。因此，EADV生活质量与患者导向结局工作组、痤疮/玫瑰痤疮与化脓性汗腺炎工作组的参与成员正在开发一款全新的痤疮专属健康相关生活质量评估工具。