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.

Additional Metadata
Keywords Autism spectrum disorder (ASD), Caregiver burden, CarerQol, Children, EuroQol fve-dimensional (EQ-5D), questionnaire · Health-related quality of life
Persistent URL,
Journal Journal of Autism and Developmental Disorders
Ten Hoopen, L, De Nijs, P.F.A., Duvekot, J, Greaves-Lord, K, Hillegers, M.H.J, Brouwer, W.B.F, & van 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