Parent Preferences for Health Outcomes Associated with Autism Spectrum Disorders.

BACKGROUND: Few studies have used preference-based quality-of-life outcomes to assess how autism spectrum disorders (ASDs) affect children and parents, and none have examined variation by ASD severity.

OBJECTIVE: Our objective was to derive parent valuations of child and parent health associated with varying ASD severity levels.

METHODS: Parents of children aged 3-17 years with and without ASD were selected from a nationally representative research panel to complete a survey. We asked parents time trade-off (TTO) questions to value their own and their child's current health. Parents of children with ASD were asked to report the severity of their child's core ASD symptoms. We calculated utility values from each TTO amount, and used a two-part regression model to estimate the change in parent-reported child health utility, as well as parent health utility, associated with ASD diagnosis and increasing symptom severity, controlling for respondent and child characteristics.

RESULTS: Sixty-nine percent of parents responded (final sample size was 135 in the ASD group and 120 in the comparison group). In adjusted analyses, there was a 0.12 (95% confidence interval [CI] 0.03-0.21) decrease in the parent-reported health utility of children with ASD, a 15% decrease from the mean health utility of children without ASD. On average, having a child with ASD was not significantly associated with a decrease in parent health utility, but there was a 0.14 (95% CI 0.01-0.26) reduction in health utility among parents of children with severe ASD, a 15% decrease from the comparison group mean.

CONCLUSIONS: Overall, ASD had a significant impact on parent-reported child health utility, and the health utility of parents of children with severe ASD.