中国特发性肾病综合征患儿及其照顾者健康相关生活质量评估。

Assessment of health-related quality of life of children with idiopathic nephrotic syndrome and their caregivers in China.

机构信息

Department of Child Health Care, Children's Hospital, Zhejiang University School of Medicine, National Clinical Research Center for Child Health, Hangzhou, 310052, Zhejiang Province, P. R. China.

Westminster School, 17a Dean's Yard, London, SW1P 3PF, UK.

出版信息

Health Qual Life Outcomes. 2024 Oct 29;22(1):94. doi: 10.1186/s12955-024-02310-6.

DOI:10.1186/s12955-024-02310-6

PMID:39472955

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11523807/

Abstract

AIMS

The primary aim of this study was to characterize the health-related quality of life (HRQoL) and identify the associated factors among children aged 2 to 18 in China diagnosed with idiopathic nephrotic syndrome (INS). Additionally, the study aimed to evaluate the HRQoL and caregiving burden of their caregivers and investigate the correlation between the HRQoL of the children and that of their caregivers.

METHODS

This study recruited 181 children diagnosed with INS from Children's Hospital, Zhejiang University School of Medicine in China. The proxy-reported PedsQL Generic Core Module (PedsQL™ 4.0 GCM) was used to measure the HRQoL of children, and the EuroQol five-dimensional questionnaire, five-level version (EQ-5D-5L) was applied to measure caregivers' HRQoL. Differences in scale scores and total scores of PedsQL™ 4.0 GCM were assessed using t-tests and one-way ANOVA. Multivariate linear regression analysis was used to identify the factors associated with children's HRQoL. Pearson correlation analysis evaluated the correlation between children's HRQoL and caregiver's HRQoL.

RESULTS

HRQoL of Children with INS declines with increasing age, and children aged 5-18 had lower scores in physical functioning, emotional functioning, school functioning, psychosocial health summary score, and total PedsQL™ 4.0 GCM score compared to healthy children. Various factors, including the mother filling out the questionnaire, the father being unemployed, and the use of other medications except for steroids, were associated with worse HRQoL of children (p values < 0.05). Additionally, a correlation exists between children's HRQoL and their caregivers' HRQoL.

CONCLUSION

This study evaluated the HRQoL of children aged 2-18 years diagnosed with INS in China, along with the HRQoL of their caregivers. Multiple factors potentially influence the HRQoL of children. A significant correlation was observed between the HRQoL of children and their caregivers, who frequently experienced varying levels of caregiving burden. Therefore, it is recommended that healthcare professionals prioritize optimizing HRQoL for children with INS and their caregivers.

摘要

目的

本研究的主要目的是描述中国 2 至 18 岁特发性肾病综合征（INS）患儿的健康相关生活质量（HRQoL）特征，并确定其相关因素。此外，本研究还旨在评估其照料者的 HRQoL 和照护负担，并探讨患儿 HRQoL 与其照料者 HRQoL 之间的相关性。

方法

本研究纳入了来自浙江大学医学院附属儿童医院的 181 名 INS 患儿。采用儿童健康生活质量普适性核心量表（PedsQLTM 4.0 GCM）评估患儿的 HRQoL，采用欧洲五维健康量表（EQ-5D-5L）评估照料者的 HRQoL。采用 t 检验和单因素方差分析评估 PedsQLTM 4.0 GCM 量表评分和总分的差异。采用多元线性回归分析识别与患儿 HRQoL 相关的因素。采用 Pearson 相关分析评估患儿 HRQoL 与照料者 HRQoL 之间的相关性。

结果

INS 患儿的 HRQoL 随年龄增长而下降，与健康儿童相比，5-18 岁患儿的生理功能、情绪功能、学校功能、心理社会健康综合评分和总 PedsQLTM 4.0 GCM 评分较低。母亲填写问卷、父亲失业以及使用皮质类固醇以外的其他药物等多种因素与患儿 HRQoL 较差相关（p 值均＜0.05）。此外，患儿 HRQoL 与照料者 HRQoL 之间存在相关性。