Racial Differences in Quality of Life of Parents of Children with Autism Spectrum Disorder

Poster Presentation
Friday, May 11, 2018: 11:30 AM-1:30 PM
Hall Grote Zaal (de Doelen ICC Rotterdam)
T. Lavelle1 and C. Mule2, (1)Center for the Evaluation of Value and Risk in Health, Tufts Medical Center, Boston, MA, (2)Center for Children with Special Needs, Tufts Medical Center, Boston, MA
Background: Previous research has documented a decreased health-related quality of life (HRQOL) for parents of children with autism spectrum disorder (ASD). However, limited research is available regarding whether these HRQOL outcomes vary by race/ethnicity.

Objectives: Our objective was to estimate the association between race/ethnicity and HRQOL among parents of children with ASD.

Methods: Parents of children between the ages of 3-17 years and diagnosed with ASD were selected from a nationally representative research panel in the United States to complete a survey. The online survey was administered in English. All survey respondents rated their own HRQOL on a 0-100 visual analog scale, where 100 represented the best imaginable health state, and 0 represented the worst imaginable health state. Parents of children with ASD were asked to report the severity of their child’s social communication and behavior impairments, with descriptions of these impairments adapted from the DSM-5. We used linear regression analysis to examine the association between parent HRQOL scores and race/ethnicity (black, non-Hispanic, white, non-Hispanic, Hispanic, and other, non-Hispanic), controlling for socio-demographic characteristics, co-morbidities not related to the ASD diagnosis, as well as the presence of other children in the household.

Results: We received responses from 72% of parents of children with ASD who were invited to complete the survey. Eight respondents were eliminated from the sample due to age and diagnostic criteria, leaving a final analysis sample size of 137. Parents of children with ASD reported a mean HRQOL score of 77 (95% CI: 74-80). In adjusted analyses that controlled for child symptom severity and other socio-demographic and clinical characteristics, being Hispanic (vs. white, non-Hispanic) was associated with a 14 point decrease (95% CI: 1-26) in parent HRQOL. There were no statistically significant differences between black vs. white non-Hispanic parent HRQOL or “other” race vs. white, non-Hispanic parent HRQOL.

Conclusions: In adjusted analyses that accounted for other variables that affect parent quality of life, including child symptom severity, HRQOL is similar for black and white, non-Hispanic, parents of children with ASD, but Hispanic parents report significantly worse HRQOL compared to white, non-Hispanic parents. More research is needed to understand the reasons behind this decreased HRQOL in Hispanic parents of children with ASD.