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17-10-2019 | Original Paper | Uitgave 1/2020 Open Access

Journal of Autism and Developmental Disorders 1/2020

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

Tijdschrift:
Journal of Autism and Developmental Disorders > Uitgave 1/2020
Auteurs:
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
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Abstract

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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