Out-of-pocket Medical Costs for Parents with Children with Down Syndrome in the United States

Presented at the ISPOR 20th Annual International Meeting, Philadelphia, PA, USA, May 16–20, 2015 • As prenatal testing for Down syndrome (DS) evolves, expectant parents must make decisions about their pregnancy options with limited time and information1 • Cuckle et al. estimated the incremental lifetime cost of raising a child with DS to be as high as $900,000 (2013 USD)2; this study used estimates from Waitzman et al.3 which included direct costs and indirect costs over the entire lifespan for 558 individuals born in California in 1998 with DS • Boulet et al. have also estimated that the annual average incremental medical costs incurred by insurers for children with DS under 5 years of age was approximately $33,347 (2004 USD)4; their study does not address individual out-of-pocket costs to parents • Expectant couples making pregnancy decisions are more interested in knowing what their individual out-of-pocket expenses for raising a child with DS will be rather than societal costs or medical costs incurred by their insurance company • Little information about costs from the individual parental perspective exists in the current literature To estimate the out-of-pocket health care costs associated with raising a child with DS between birth and 18 years of age from the perspective of commercially insured parents BACKGROUND STUDY OBJECTIVE