Abstract
Background/Aims Approximately 1 in 88 children in the U.S. is diagnosed with Autism Spectrum Disorder (ASD). ASD is a complex disorder characterized by impairment in social skills, communication, and cognitive and behavioral functioning. In order for policy makers and clinical managers to evaluate new approaches to treating and managing ASD, they need brief comprehensive outcome measures. One approach that could be useful in this context is measurement of health-related quality of life (HR-QOL), which provides a comprehensive picture of health status including an individual’s psychosocial, emotional, and physical wellbeing. This comprehensive approach is particularly important in conditions such as ASD that have multiple impacts on a person’s health. Few previous studies have examined HR-QOL in persons with ASD, and most of these studies have used small samples. The purpose of this analysis is to examine HR-QOL in a group of geographically- and racially/ethnically-diverse children with ASD who are enrolled in the Mental Health Research Network (MHRN) Autism Registry.
Methods A Web-based survey of parents of children with ASD was implemented at four MHRN Autism Registry sites, including children’s HR-QOL, measured by the Pediatric Quality of Life Inventory (PedsQLTM). The PedsQLTM provides an overall score, as well as subscales for important domains including physical health, psychosocial health, emotional functioning, social functioning, and school functioning.
Results To date, recruitment letters have been mailed to approximately 8800 parents and 800 surveys have been completed. Preliminary analyses of respondents indicate that HR-QOL is lower in children with ASD compared to national norms. We will present the final results from the survey, which will conclude in November 2012. The presentation will examine the overall scores, scores on subscales, and scores by subgroup (e.g., age, gender, race) and will compare these scores to national norms.
Conclusions We successfully implemented a Web-based survey of parents of children with ASD across four MHRN sites. With 800 completed surveys (recruitment will continue through November 2012), this is the largest known population-based survey on children with ASD to date. The current study will help to confirm results from smaller samples and will allow for more refined analyses of subgroups.
