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.

中文翻译：

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斑秃，总体和通用性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

背景

斑秃的以护理者为中心的生活质量（QoL）研究非常有限。没有一项研究采用父母量身定做的调查来研究QoL与脱发严重程度之间的关系，该关系通过脱发工具严重程度（SALT）评分来衡量。

目标

这是一项前瞻性研究，描述了患有所有斑秃的亚型的小儿患者父母的QoL，并研究了QoL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

小儿患者及其父母应邀参加临床访问。参与的父母完成了《儿童慢性病问卷》（QLCCDQ）的生活质量和家庭皮肤病生活质量指数（FDLQI）。一小部分儿童完成了儿童皮肤病生活质量指数（CDLQI）。记录调查完成时的SALT分数。

结果

总共包括153名患者。在SALT得分与FDLQI得分，QLCCDQ得分和QLCCDQ情感领域得分之间发现显着的轻度至中度负相关。儿童的年龄与QLCCDQ得分呈负相关，而与FDLQI得分则不呈负相关。在疾病持续时间与FDLQI得分，QLCCDQ得分或QLCCDQ情感领域得分之间未发现显着相关性。

局限性

这项研究受到样本量小和横截面设计的限制。

结论

父母QoL受损可能与疾病严重程度和患病儿童年龄的增加有关，而与疾病持续时间无关。提供者应相应地制定咨询意见，并帮助父母为该病的长期经验设定切合实际的期望。