Analysis Group Team’s Pro Bono Research Reveals Family Out-of-Pocket Health Care Costs for Children with Down Syndrome

February 27, 2017

Study co-authored with Massachusetts General Hospital and Harvard Economics Department featured in reports by WCBV News and Fox25 News

An Analysis Group team, including Managing Principals Mei Sheng Duh and Patrick Lefebvre, collaborated on a pro bono basis with Harvard University Economics Professor  John Campbell, PhD and Harvard Medical School Assistant Professor Brian Skotko, MD, MPP (Co-Director of the Down Syndrome Program at Massachusetts General Hospital) on a study to quantify the parental out-of-pocket medical cost associated with raising a child with Down Syndrome (DS) among families with commercial insurance coverage. 

Drs. Skotko and Campbell have been working with families who have undergone prenatal testing and learned that they are expecting a child with DS. In collaboration with Analysis Group, they conducted a retrospective matched-cohort study that compared families with children diagnosed with DS with those that did not have children with DS, using data from the OptumHealth Reporting and Insights database based on 18 million commercially insured individuals between 1999 and 2011.

The resulting research found that, among commercially insured families, the average annual out-of-pocket cost difference was $1,907 during the first year for parents with a child with DS. This out-of-pocket cost difference for parents dipped to $537 annually when children were 13-18 years of age. In total, the average out-of-pocket incremental cost increase for commercially insured parents raising a child with DS was found to be $18,000 over the first 18 years of life. The study, “Out-of-Pocket Medical Costs and Third-Party Healthcare Costs for Children with Down Syndrome,” published in the American Journal of Medical Genetics in December 2016, aims to provide helpful information for families who receive a prenatal diagnosis of DS. The study was also reported on by the WCVB News and Fox 25 News Stations in Boston.

Read the study
Watch WCVB News coverage of the study
Watch Fox25 News coverage of the study