The Lewin Group to perform two-year study on health outcomes in children with ASD

The National Institute of Mental Health (NIMH) has selected The Lewin Group to perform a two-year study on health outcomes in children with autism and their families. The study will describe the range of medical conditions experienced by children with autism spectrum disorders (ASD) and the health outcomes of the children and their families.

“This study also builds upon Lewin's longstanding support of child health programs at NIH and other federal agencies.”

"Children with ASD often have co-occurring medical conditions that, in themselves, cause considerable difficulty and affect both the child's and the family's quality of life," according to Ann Wagner, Ph.D., of the NIMH Division of Developmental Translational Research. "Past research on this issue has often been based on small numbers of individuals, making it difficult to estimate the extent of such problems across the ASD spectrum. This study presents a unique opportunity to capture the range of medical conditions experienced by individuals with ASD and their families."

According to the Centers for Disease Control and Prevention, ASD currently affect approximately 1 out of 110 children in the United States, and the number of diagnosed cases of ASD has been rising significantly in recent years.

"This innovative project has the potential to contribute significantly to our understanding of the impact of autism spectrum disorders on the overall health of children, their siblings and parents and to provide a deeper understanding of how they use the health care system. The research may provide new insights into the health care experience and health care needs of these children and their families," said Dr. Taylor Dennen the study's director at The Lewin Group. "This study also builds upon Lewin's longstanding support of child health programs at NIH and other federal agencies."

To perform the study, The Lewin Group will draw upon the resources and capabilities of academic partners, Ingenix and OptumHealth Behavioral Solutions. Lewin will analyze existing de-identified health claims data sets to compare health outcomes and utilization for children with ASD and their families with demographically matched non-ASD families. Lewin's collaborating partners include epidemiologists, health services researchers and clinicians from the Drexel University Department of Epidemiology, Insight Policy Research, Ingenix's i3 Innovus division, and behavioral health research experts from OptumHealth.

Goals of the study include:

• describing the baseline characteristics of children with ASD and their families and assessing the accuracy of the ASD diagnosis within the study population;
• examining the health outcomes of children with ASD and their family members, including adverse medical outcomes and the progression of these outcomes over time, and comparing these outcomes to those of demographically matched controls;
• quantifying the health care utilization of children with ASD and their families over time, including inpatient and outpatient health care services, behavioral care, and comparing utilization with demographically matched controls; and
• investigating the potential value of administrative databases for future studies of risk factors associated with ASD . This will include describing the availability, accuracy and completeness of data about relevant independent and dependent variables as well as describing the feasibility of conducting additional data collection based on, and ultimately linked with, existing administrative data.

The study will be completed by September 2012, resulting in a series of reports and publications describing findings.