Journal
JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS
Volume 50, Issue 1, Pages 263-277Publisher
SPRINGER/PLENUM PUBLISHERS
DOI: 10.1007/s10803-019-04249-w
Keywords
Autism spectrum disorder (ASD); Caregiver burden; CarerQol; Children; EuroQol five-dimensional (EQ-5D) questionnaire; Health-related quality of life
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Funding
- Sophia Foundation for Scientific Research (SSWO) [958]
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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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