Rutter K J, Ashraf I, Cordingley L, Rhodes L E
Centre for Dermatology Research, Division of Musculoskeletal and Dermatological Sciences, School of Biological Sciences, Faculty of Biology, Medicine and Health, The University of Manchester and Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, U.K.
Health Psychology, Division of Musculoskeletal and Dermatological Sciences, School of Biological Sciences, Faculty of Biology, Medicine and Health, The University of Manchester and Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, U.K.
Br J Dermatol. 2020 May;182(5):1092-1102. doi: 10.1111/bjd.18326. Epub 2019 Sep 12.
The photodermatoses affect large proportions of the population but their impact on quality of life (QoL) and psychological health has not been reviewed. Several tools are available to evaluate QoL and psychological impacts.
To systematically review current literature to identify tools used to assess QoL and psychological impacts in patients with photodermatoses, and to summarize the reported findings.
A systematic search of PubMed, OVID Medline, PsycInfo and CINAHL was performed for articles investigating QoL and/or psychological impact in patients with photodermatoses, published between 1960 and September 2018.
Twenty studies were included: 19 incorporated QoL assessment while three evaluated psychological morbidity. Six QoL tools were found to be used: Dermatology Life Quality Index (DLQI), Children's DLQI, Family DLQI, Skindex (16- and 29-item versions), Erythropoietic Protoporphyria Quality of Life (EPP-QoL) and EuroQol. Between 31% and 39% of photosensitive patients reported a very large impact on QoL (DLQI > 10). Employment and education, social and leisure activities, and clothing choices were particularly affected. Only one tool was specifically designed for a photodermatosis (EPP-QoL). Four tools were used to evaluate psychological impact: the Hospital Anxiety and Depression Scale, Fear of Negative Evaluation, brief COPE and Illness Perception Questionnaire-Revised. Levels of anxiety and depression were approximately double British population data. Patients with facial involvement, female gender and younger age at onset showed more psychological morbidity.
Several tools have been used to assess QoL in the photodermatoses, and confirm substantial impact on QoL. Development of specific, validated QoL measures would address their unique impacts. Research delineating their psychological comorbidity is sparse and requires further exploration. What's already known about this topic? The photodermatoses negatively impact quality of life (QoL) and cause psychological distress, but no reviews of this area appear in the literature. What does this study add? Few studies have explored the psychological and social impacts of the photodermatoses. There are no fully validated QoL tools specific to the photodermatoses. Around one-third of adult and child patients with photosensitivity experience very or extremely large impact on QoL, with particular effect on clothing choices, employment and social and leisure activities. Studies suggest anxiety and depression levels in these patients are around double those in the U.K. general population. More attention is required on these 'hidden' conditions.
光皮肤病影响着很大一部分人群，但尚未对其对生活质量（QoL）和心理健康的影响进行综述。有几种工具可用于评估生活质量和心理影响。
系统回顾当前文献，以确定用于评估光皮肤病患者生活质量和心理影响的工具，并总结报告的研究结果。
对PubMed、OVID Medline、PsycInfo和CINAHL进行系统检索，查找1960年至2018年9月期间发表的关于光皮肤病患者生活质量和/或心理影响的研究文章。
纳入20项研究：19项纳入生活质量评估，3项评估心理疾病。发现使用了6种生活质量工具：皮肤病生活质量指数（DLQI）、儿童DLQI、家庭DLQI、Skindex（16项和29项版本）、红细胞生成性原卟啉病生活质量（EPP-QoL）和欧洲生活质量量表。31%至39%的光敏患者报告生活质量受到极大影响（DLQI>10）。就业和教育、社交和休闲活动以及服装选择受到的影响尤为明显。只有一种工具是专门为一种光皮肤病（EPP-QoL）设计的。4种工具用于评估心理影响：医院焦虑抑郁量表、害怕负面评价、简易应对方式问卷和疾病认知问卷修订版。焦虑和抑郁水平约为英国人群数据的两倍。面部受累、女性以及发病年龄较小的患者心理疾病发病率更高。
已使用多种工具评估光皮肤病患者的生活质量，并证实其对生活质量有重大影响。开发特定的、经过验证的生活质量测量方法将解决其独特影响。关于其心理合并症的研究较少，需要进一步探索。关于该主题已知的情况是什么？光皮肤病对生活质量产生负面影响并导致心理困扰，但文献中未出现对该领域的综述。这项研究增加了什么？很少有研究探讨光皮肤病的心理和社会影响。没有专门针对光皮肤病的经过充分验证的生活质量工具。大约三分之一的成年和儿童光敏患者的生活质量受到非常大或极其大的影响，对服装选择、就业以及社交和休闲活动有特别影响。研究表明这些患者的焦虑和抑郁水平约为英国普通人群的两倍。需要更多关注这些“隐藏”的疾病。
