Parent Preferences for Health Outcomes Associated with Autism Spectrum Disorders

Abstract

Background: Few studies have used preference-based quality of life measures to assess how autism spectrum disorders (ASD) affect children and their parents, and none have examined variation in outcomes by parent-reported ASD severity. We derive utility values associated with varying ASD severity levels for both children with ASD and their parents.

Methods: Parents of children 3-17 years with and without ASD were selected from a nationally representative research panel to complete an internet survey. All survey respondents answered a series of time trade-off (TTO) questions to value their own and their child’s current health state. Respondents were also asked socio-demographic and health questions regarding themselves and their child. Parents of children with ASD were asked to report the severity of their child’s core ASD symptoms based on social communication impairments and restricted repetitive patterns of behavior. We calculated utility values from each TTO amount. We used a two-part regression model to estimate the change in child health utility, and the change in parent health utility, associated with ASD diagnosis and increasing symptom severity, controlling for respondent socio-demographic characteristics, child’s gender, age, insurance status and other non-ASD related illnesses, as well as the presence of other children in the household.

Results: 69% of parents responded. We eliminated 9% of respondents due to missing or invalid responses, leaving an analysis sample size of 255 (135 parents of children with ASD and 120 parents of children without ASD). In adjusted analyses, having any form of ASD was significantly associated with a 0.11 (95% CI: 0.03-0.20) decrease in child health utility, a 14% decrease from the mean health utility of children without ASD. On average, having a child with ASD was not significantly associated with parent health utility, but having a child categorized as high severity was associated with a 0.14 (95% CI: 0.01-0.26) reduction in parent health utility, a 15% decrease from the comparison group mean.

Conclusions: ASD has a large impact on child health utility values. We did not find an association between parent health utility and ASD, on average, but having a child with the most severe symptoms was associated with decreased parent health utility.