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东伦敦地区孟加拉裔特应性皮炎患者及其家人的皮肤病生活质量指数评分

Dermatology Quality of Life Index scores in Bangladeshi patients with atopic eczema and their families in East London.

作者信息

Tawfik Soha S, Thomas Bjorn R, Kelsell David P, Grigg Jonathan, O'Toole Edel A

机构信息

Department of Dermatology, Venereology and Andrology, Faculty of Medicine, Alexandria University, Alexandria, Egypt.

Centre for Cell Biology and Cutaneous Research, Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK.

出版信息

Br J Dermatol. 2023 Mar 30;188(4):524-532. doi: 10.1093/bjd/ljac131.

Abstract

BACKGROUND

Atopic eczema (AE) is a chronic relapsing, pruritic disease that greatly affects the child and family's quality of life (QoL). It is usually common and severe among children of Bangladeshi ethnicity.

OBJECTIVES

This is a cross-sectional quantitative study in patients with AE of Bangladeshi origin, which aims to analyse different components of the family, children and adult quality-of-life indices and their relationship to patient age, sex, eczema severity and distribution, other allergic associations, parental education and socioeconomic level.

METHODS

Children and young adults of Bangladeshi origin aged 0-30 years, clinically diagnosed with AE were recruited as part of the Tower Hamlets Eczema Assessment project, a clinical phenotyping study of AE in the Bangladeshi population living in East London. Questionnaires completed by children/parents included the Family Dermatology Life Quality Index (FDLQI), Infant's Dermatology Quality of Life (IDQOL) and the Children's Dermatology Life Quality Index (CDLQI). Young adults completed the Dermatology Life Quality Index (DLQI). The disease severity was assessed objectively using the Eczema Area Severity Index (EASI). Patients and parents who did not read or speak English were aided by Bengali/Sylheti-speaking research assistants.

RESULTS

Overall, 460 Bangladeshi children and 98 adults with AE were recruited. Burden of care, extra housework and emotional distress were the highest affected domains in parental QoL, while itching and sleep were the highest for children. Significant factors influencing FDLQI score were EASI [marginal effect (ME) 1.01, 95% confidence interval (CI) 1.00-1.03; P = 0.004], age (ME 0.98, 95% CI 0.97-0.99; P = 0.004), extensor eczema distribution (ME 1.25, 95% CI 1.03-1.52; P = 0.023), parental English fluency (ME 1.29, 95% CI 1.10-1.52; P = 0.002) and atopic comorbidities (ME 1.10, 95% CI 1.04-1.17; P = 0.001). Parental socioeconomic class was a nonsignificant factor. IDQOL/CDLQI was influenced significantly by the child's age (ME 0.99, 95% CI 0.97-1.00, P = 0.023), 'nonclear' eczema distribution clusters especially the 'severe extensive' cluster (ME 1.46, 95% CI 1.15-1.84; P = 0.002) and nonsignificantly by EASI and parental English literacy and socioeconomic levels. DLQI was affected significantly by nonclear eczema distribution groups especially 'severe extensive' (ME 2.49, 95% 1.76-3.53; P < 0.001) and nonsignificantly by patient age, and female sex.

CONCLUSIONS

AE is a chronic disease where many external factors other than disease severity affect QoL of patients and their families, -especially in under-represented minority groups who face different linguistic and cultural barriers.

摘要

背景

特应性皮炎(AE)是一种慢性复发性瘙痒性疾病,严重影响儿童及其家庭的生活质量(QoL)。在孟加拉裔儿童中,该病通常较为常见且严重。

目的

这是一项针对孟加拉裔AE患者的横断面定量研究,旨在分析家庭、儿童和成人生活质量指数的不同组成部分,以及它们与患者年龄、性别、湿疹严重程度和分布、其他过敏关联、父母教育程度和社会经济水平的关系。

方法

作为塔哈姆雷特湿疹评估项目的一部分,招募了年龄在0至30岁之间、临床诊断为AE的孟加拉裔儿童和年轻人,该项目是对居住在东伦敦的孟加拉人群中AE的临床表型研究。儿童/父母填写的问卷包括家庭皮肤病生活质量指数(FDLQI)、婴儿皮肤病生活质量(IDQOL)和儿童皮肤病生活质量指数(CDLQI)。年轻人填写皮肤病生活质量指数(DLQI)。使用湿疹面积和严重程度指数(EASI)客观评估疾病严重程度。不会读写英语的患者和父母由会说孟加拉语/锡尔赫蒂语的研究助理提供帮助。

结果

总体而言,招募了460名患有AE的孟加拉裔儿童和98名成人。在父母的生活质量方面,护理负担、额外家务和情绪困扰是受影响最大的领域,而在儿童中,瘙痒和睡眠受影响最大。影响FDLQI评分的显著因素包括EASI[边际效应(ME)1.01,95%置信区间(CI)1.00 - 1.03;P = 0.004]、年龄(ME 0.98,95% CI 0.97 - 0.99;P = 0.004)、伸侧湿疹分布(ME 1.25,95% CI 1.03 - 1.52;P = 0.023)、父母英语流利程度(ME 1.29,95% CI 1.10 - 1.52;P = 0.002)和特应性合并症(ME 1.10,95% CI 1.04 - 1.17;P = 0.001)。父母的社会经济阶层是一个不显著的因素。IDQOL/CDLQI受儿童年龄(ME 0.99,95% CI 0.97 - 1.00,P = 0.023)、“不明确”的湿疹分布簇尤其是“严重广泛”簇(ME 1.46,95% CI 1.15 - 1.84;P = 0.002)的显著影响,而受EASI、父母英语读写能力和社会经济水平的影响不显著。DLQI受不明确的湿疹分布组尤其是“严重广泛”组(ME 2.49,95% 1.76 - 3.53;P < 0.001)的显著影响,受患者年龄和女性性别的影响不显著。

结论

AE是一种慢性疾病,除疾病严重程度外,许多外部因素会影响患者及其家庭的生活质量,尤其是在面临不同语言和文化障碍的代表性不足的少数群体中。

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