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 fve-dimensional (EQ5D) 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 efects, almost all caregivers (96%) derived fulfllment from caring for their afected 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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Journal of Autism and Developmental Disorders
Erasmus MC: University Medical Center Rotterdam

Ten Hoopen, L, De Nijs, P.F.A., Duvekot, J., Greaves-Lord, K., Hillegers, M., Brouwer, W., & Hakkaart-van Roijen, L. (2019). Children with an autism spectrum disorder and their caregivers: capturing health-related and care-related quality of life. Journal of Autism and Developmental Disorders, 49(323), 1–15. doi:10.1007/s10803-019-04249-w