Children with an autism spectrum disorder and their caregivers: capturing health-related and care-related quality of life
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.
|Keywords||Autism spectrum disorder (ASD), Caregiver burden, CarerQol, Children, EuroQol fve-dimensional (EQ-5D), questionnaire · Health-related quality of life|
|Persistent URL||dx.doi.org/10.1007/s10803-019-04249-w, hdl.handle.net/1765/120716|
|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