Tekin Burak, Gurel Mehmet Salih, Topkarci Zeynep, Topaloglu Demir Filiz, Aytekin Sema, Cebeci Kahraman Filiz, Singer Ralfi, Erdemir Vefa Asli, Uzuncakmak Tugba Kevser, Yasar Sirin, Akdeniz Necmettin, Altunay Ilknur Kivanc, Kocaturk Emek, Turkoglu Zafer, Erdogan Bilgen
Department of Dermatology, Goztepe Research and Training Hospital, Istanbul Medeniyet University, Istanbul, Turkey.
Department of Dermatology, Bakirkoy Dr. Sadi Konuk Research and Training Hospital, Istanbul, Turkey.
Pediatr Dermatol. 2018 Sep;35(5):651-659. doi: 10.1111/pde.13585. Epub 2018 Jul 9.
BACKGROUND/OBJECTIVES: The effect of pediatric psoriasis on quality of life has been demonstrated, but data regarding its influence on caregiver quality of life are scarce. The objective was to investigate how psoriasis affects quality of life of children and their caregivers.
This multicenter study included 129 children with psoriasis and their caregivers, who were family members accompanying patients to the clinic. Patient quality of life was measured using the Child Dermatology Life Quality Index. Caregiver quality of life was assessed using Dermatological Family Impact Scale, a 15-item questionnaire validated for use in the Turkish language.
Mean Child Dermatology Life Quality Index score was 7.6, indicating a moderate effect on patient quality of life. Symptoms and feelings were the most severely impaired domains of patient quality of life, and emotions was the most severely impaired domain of caregiver quality of life. Dermatological Family Impact Scale score was significantly correlated with Child Dermatology Life Quality Index (correlation coefficient [r] = .554, P < .001) and Psoriasis Area and Severity Index (r = .350, P < .001). Caregivers of patients receiving systemic agents or phototherapy had relative impairment of multiple domains of quality of life compared to caregivers of patients receiving topical treatment only.
Psychosocial effect of pediatric psoriasis was shown to extend beyond the individual, highlighting the importance of addressing patient and caregiver quality of life concerns in an integrated approach.
背景/目的：小儿银屑病对生活质量的影响已得到证实，但关于其对照料者生活质量影响的数据却很匮乏。本研究的目的是调查银屑病如何影响儿童及其照料者的生活质量。
这项多中心研究纳入了129名银屑病患儿及其照料者，照料者均为陪同患儿到诊所就诊的家庭成员。采用儿童皮肤病生活质量指数来衡量患儿的生活质量。使用皮肤病家庭影响量表评估照料者的生活质量，该量表是一份经过验证可用于土耳其语的包含15个条目的问卷。
儿童皮肤病生活质量指数的平均得分为7.6，表明对患儿生活质量有中度影响。症状和感受是患儿生活质量受损最严重的领域，而情绪是照料者生活质量受损最严重的领域。皮肤病家庭影响量表得分与儿童皮肤病生活质量指数显著相关（相关系数[r]=0.554，P<0.001），与银屑病面积和严重程度指数也显著相关（r=0.350，P<0.001）。与仅接受局部治疗患儿的照料者相比，接受全身治疗或光疗患儿的照料者在多个生活质量领域存在相对受损情况。
小儿银屑病的心理社会影响不仅局限于患儿个体，这凸显了以综合方法解决患儿及其照料者生活质量问题的重要性。
