Quality of Life for Children with Autism Spectrum Disorders and their Parents
Massachusetts General Hospital
Basic & Clinical
Health-realted quality of life (HRQoL) is a multidimensional measure of the effects of ilness on a patient, as perceived by the individual or proxy-reporter. This study will assess the HRQoL of children with ASD and that of their parents. Specifically, this study will assess the relationship of child HRQoL with measures of clinical severity, sleep disorders, behavior, and executive functioning. This study will also examine the relationship between parental quality of life scores with the child's HRQol and the child's clinical characteristics. A final goal will be to develop an autism-specific HRQoL measure for children. This study will maximize the utility of the Autism Treatment Network (ATN), a multi-site collaborative program focused on establishing standards of medical care for ASD children. The ATN enrolls large numbers of children nationwide and provides a data registry comprised of standardized measures. What this means for people with autism: A better understanding of the factors that predict an improved HRQoL for children with ASD could help clinicians better target treatment efforts. This, in turn, will impact the family and may lead to an improved quality of life across the family unit. Having an HRQoL tool that specifically addresses ASD children will provide a critical measure of outcome for use in future clinical and research trials.