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.

Autism spectrum disorder (ASD), Caregiver burden, CarerQol, Children, EuroQol five-dimensional (EQ-5D) questionnaire, Health-related quality of life,
Journal of Autism and Developmental Disorders

ten Hoopen, L.W, de Nijs, P.F.A, Duvekot, J, Greaves-Lord, K, Hillegers, M.H.J, Brouwer, W.B.F, & 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. doi:10.1007/s10803-019-04249-w