Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life

被引：0
作者：
Leontine W. ten Hoopen
Pieter F. A. de Nijs
Jorieke Duvekot
Kirstin Greaves-Lord
Manon H. J. Hillegers
Werner B. F. Brouwer
Leona Hakkaart-van Roijen
机构：
[1] Sophia Children’s Hospital,Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC
[2] Rotterdam,Erasmus School of Health Policy & Management
[3] Erasmus University Rotterdam,undefined
[4] Yulius Mental Health,undefined
来源：
Journal of Autism and Developmental Disorders | 2020年 / 50卷
关键词：
Autism spectrum disorder (ASD); Caregiver burden; CarerQol; Children; EuroQol five-dimensional (EQ-5D) questionnaire; Health-related quality of life;
D O I：
暂无
中图分类号：
学科分类号：
摘要：
This study investigated health-related QoL (HRQoL) and care-related quality of life (CarerQol) in clinically referred children with an autism spectrum disorder (ASD), and their primary and secondary caregivers. The EuroQol five-dimensional (EQ-5D) and the CarerQol questionnaires were used to respectively measure health-related QoL and care-related QoL. Primary caregivers reported pain/discomfort (42%) and anxiety/depression (40%). In caring, they mostly experienced problems in the relationship with the child (84%), and in combining care with daily activities (51%). Children with ASD had a relevantly lower QoL. Despite negative effects, almost all caregivers (96%) derived fulfillment from caring for their affected children. HRQoL and CarerQol reports of primary caregivers and children were correlated, both providing useful information to ASD measurement and treatment.
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页码：263 / 277
页数：14
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