Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life.
Leontine W Ten Hoopen, Pieter F A de Nijs, Jorieke Duvekot and 4 others
PMID 31625009WHAT IT FOUND
Children with autism had lower health-related quality of life than Dutch peers, especially self-care, usual activities, and anxiety/depression.
Primary caregivers' own health-related quality of life was not lower, but lower care-related quality of life was linked to their anxiety, pain, and child anxiety.
Key findings
01Children's mean health-related quality of life score was 0.67 on a 0 to 1 scale, lower than the Dutch norm score of 0.94.
02Primary and secondary caregivers' health-related quality of life did not show a significant reduction compared with Dutch norms, but lower care-related quality of life was associated with more anxiety/depression in caregivers and children.
03Primary caregivers commonly reported relational problems with the child (84%) and combining care with daily activities (51%), but also high fulfillment (96%) and support (88%).
STILL TO COME
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What it does not show
The analysed sample was smaller than the initial screened group because some children with an autism or autism spectrum disorder classification did not have a health-related quality of life questionnaire. The sample was relatively small and may not represent all children with autism spectrum disorder; many lived with both biological parents and were somewhat less impaired. Child quality of life was proxy-reported by caregivers, not self-reported, and the same primary caregiver provided both child and caregiver reports, which may affect correlations. The Dutch child population norm used for comparison was based on a small sample and a different age range. The EQ-5D is generic and may not be sensitive to autism-specific quality of life. Secondary caregivers did not complete the care-related quality of life measure.
Declared interests
The supplied text states that the Sophia Foundation for Scientific Research funded the study.
The easy way to misread this
Do not conclude that parents of children with autism have poorer health-related quality of life than other parents. The study found their health-related quality of life was not lower than Dutch norms; the clear reduction was in the children's proxy-reported health-related quality of life.