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斑秃患儿父母的疾病严重程度和生活质量:一项前瞻性、横断面研究。

Severity of disease and quality of life in parents of children with alopecia areata, totalis, and universalis: A prospective, cross-sectional study.

机构信息

Division of Pediatrics, Section of Dermatology, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.

Department of Dermatology, Nationwide Children's Hospital, Columbus, Ohio.

出版信息

J Am Acad Dermatol. 2019 May;80(5):1389-1394. doi: 10.1016/j.jaad.2018.12.051. Epub 2019 Jan 8.

DOI:10.1016/j.jaad.2018.12.051
PMID:30633941
Abstract

BACKGROUND

Caregiver-oriented quality of life (QoL) research in alopecia areata is limited. No study has used a parent-tailored survey to examine the relationship between QoL and severity of alopecia as measured by Severity of Alopecia Tool (SALT) scores.

OBJECTIVES

This is a prospective study that describes QoL in parents of pediatric patients with all subtypes of alopecia areata and investigates the relationship between QoL and severity of disease, duration of disease, and age of patients.

METHODS

Pediatric patients and their parents were invited to participate during clinic visits. Participating parents completed the Quality of Life in a Child's Chronic Disease Questionnaire (QLCCDQ) and the Family Dermatology Life Quality Index (FDLQI). A subset of children completed the Children's Dermatologic Life Quality Index (CDLQI). SALT scores at time of survey completion were recorded.

RESULTS

In total, 153 patients were included. Significant mild-to-moderate negative correlations were found between SALT scores and FDLQI scores, QLCCDQ scores, and QLCCDQ emotional domain scores. Age of child correlated negatively with QLCCDQ scores but not FDLQI scores. No significant correlation was found between duration of disease and FDLQI scores, QLCCDQ scores, or QLCCDQ emotional domain scores.

LIMITATIONS

This study is limited by its small sample size and cross-sectional design.

CONCLUSIONS

Impaired parent QoL might be associated with increasing severity of disease and age of affected child but not duration of disease. Providers should tailor counseling accordingly and help parents set realistic expectations for long-term experience with the disease.

摘要

背景

斑秃患者的以照顾者为中心的生活质量(QoL)研究有限。没有研究使用针对父母的调查问卷来检查 QoL 与脱发严重程度之间的关系,脱发严重程度用脱发严重程度工具(SALT)评分来衡量。

目的

这是一项前瞻性研究,描述了患有所有类型斑秃的儿科患者的父母的生活质量,并调查了生活质量与疾病严重程度、疾病持续时间和患者年龄之间的关系。

方法

在就诊期间邀请儿科患者及其父母参与。参与的父母完成了儿童慢性病生活质量问卷(QLCCDQ)和家庭皮肤病生活质量指数(FDLQI)。部分儿童完成了儿童皮肤病生活质量指数(CDLQI)。在完成调查时记录 SALT 评分。

结果

共纳入 153 名患者。SALT 评分与 FDLQI 评分、QLCCDQ 评分和 QLCCDQ 情绪领域评分之间存在显著的轻度至中度负相关。儿童年龄与 QLCCDQ 评分呈负相关,但与 FDLQI 评分无关。疾病持续时间与 FDLQI 评分、QLCCDQ 评分或 QLCCDQ 情绪领域评分之间无显著相关性。

局限性

本研究受到样本量小和横断面设计的限制。

结论

父母生活质量受损可能与疾病严重程度和受影响儿童的年龄增加有关,但与疾病持续时间无关。提供者应相应地调整咨询,并帮助父母对疾病的长期体验设定现实的期望。

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