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儿童斑秃对患者及其家庭成员生活质量的影响:一项全国性多中心问卷调查研究

Impact of Pediatric Alopecia Areata on Quality of Life of Patients and Their Family Members: A Nationwide Multicenter Questionnaire Study.

作者信息

Choi Jee Woong, Kim Yul Hee, Kwak Hyunbin, Park Jin, Lee Won-Soo, Kang Hoon, Kim Jung Eun, Yoon Tae-Young, Kim Ki-Ho, Jang Yong Hyun, Kim Do Won, Kim Moon-Bum, Lew Bark-Lynn, Sim Woo-Young, Jeon Jiehyun, Seo Soo Hong, Kwon Ohsang, Huh Chang-Hun, Lee Dong-Youn, Lee Yang Won, Park Byung Choel, Won Chong Hyun, Kim Do Young, Kim Hyojin, Kim Beom Joon, Lee Young, Kim Sang Seok, Choi Gwang Seong

机构信息

Department of Dermatology, Ajou University School of Medicine, Suwon, Korea.

Department of Dermatology, Jeonbuk National University Medical School, Jeonju, Korea.

出版信息

Ann Dermatol. 2022 Aug;34(4):237-244. doi: 10.5021/ad.21.202.

DOI:10.5021/ad.21.202
PMID:35948325
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9365651/
Abstract

BACKGROUND

Pediatric alopecia areata (AA) can affect the quality of life (QoL) of patients and their family members. Research on the QoL and burden on family members in pediatric AA is limited.

OBJECTIVE

This nationwide multicenter questionnaire study described the QoL and burden of the family members of patients with pediatric AA.

METHODS

This nationwide multicenter questionnaire study enrolled AA patients between the ages of 5 and 18 years from March 1, 2017 to February 28, 2018. Enrolled patients and their parents completed the modified Children's Dermatology Life Quality Index (CDLQI) and the modified Dermatitis Family Impact (mDFI). The disease severity was measured using the Severity of Alopecia Tool (SALT) survey scores.

RESULTS

A total of 268 patients with AA from 22 hospitals participated in this study. Our study found that the efficacy and satisfaction of previous treatments of AA decreased as the severity of the disease increased. The use of home-based therapies and traditional medicines increased with the increasing severity of the disease, but the efficacy felt by patients was limited. CDLQI and mDFI scores were higher in patients with extensive AA than those with mild to moderate AA. The economic and time burden of the family members also increased as the severity of the disease increased.

CONCLUSION

The severity of the AA is indirectly proportional to the QoL of patients and their family members and directly proportional to the burden. Physicians need to understand these characteristics of pediatric AA and provide appropriate intervention to patients and their family members.

摘要

背景

儿童斑秃(AA)会影响患者及其家庭成员的生活质量(QoL)。关于儿童斑秃患者生活质量及家庭成员负担的研究有限。

目的

这项全国性多中心问卷调查研究描述了儿童斑秃患者家庭成员的生活质量和负担。

方法

这项全国性多中心问卷调查研究纳入了2017年3月1日至2018年2月28日期间年龄在5至18岁的斑秃患者。纳入的患者及其父母完成了改良的儿童皮肤病生活质量指数(CDLQI)和改良的皮炎家庭影响量表(mDFI)。使用斑秃严重程度工具(SALT)调查评分来衡量疾病严重程度。

结果

来自22家医院的268例斑秃患者参与了本研究。我们的研究发现,随着疾病严重程度的增加,既往斑秃治疗的疗效和满意度下降。随着疾病严重程度的增加,家庭疗法和传统药物的使用增加,但患者感受到的疗效有限。广泛性斑秃患者的CDLQI和mDFI评分高于轻度至中度斑秃患者。随着疾病严重程度的增加,家庭成员的经济和时间负担也增加。

结论

斑秃的严重程度与患者及其家庭成员的生活质量成反比,与负担成正比。医生需要了解儿童斑秃的这些特点,并为患者及其家庭成员提供适当的干预措施。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f429/9365651/6c175c4521f9/ad-34-237-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f429/9365651/6c175c4521f9/ad-34-237-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f429/9365651/6c175c4521f9/ad-34-237-g001.jpg

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Psychosocial and psychiatric comorbidities and health-related quality of life in alopecia areata: A systematic review.斑秃患者的精神心理共病与健康相关的生活质量:一项系统性综述。
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Efficacy and Tolerability of Brevilin-A, a Natural JAK Inhibitor, in Pediatric Alopecia Areata: A Case Series.天然JAK抑制剂Brevilin-A治疗儿童斑秃的疗效与耐受性:病例系列
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