Out-of-pocket medical costs and third-party healthcare costs for children with Down syndrome

American Journal of Medical Genetics. Part A. Mar 2017;173(3):627-637

Prior analyses have estimated the lifetime total societal costs of a person with Down syndrome (DS); however, no studies capture the expected medical costs that patients with DS can expect to incur during childhood. The study utilized the OptumHealth Reporting and Insights administrative claims database from 1999 to 2013. Children with a diagnosis of DS were identified, and their time was divided into clinically relevant age categories. Patients with DS in each age category were matched to controls without chromosomal conditions. Out-of-pocket medical costs and third-party expenditures were compared between the patient-age cohorts with DS and matched controls. Patients with DS had significantly higher mean annual out-of-pocket costs than their matched controls within each age and cost category. Total annual incremental out-of-pocket costs associated with DS were highest among individuals from birth to age 1 ($1,907, P < 0.001). the main drivers of the incrementalout-of-pocketcostsassociated with ds were inpatientcostsin the 1st year of life 925 p>< 0.001) and outpatientcostsin later years ranging 183-623 all p>< 0.001). overall patients with ds incurred incrementalout-of-pocketmedicalcostsof 18248 between birth and age 18 yearsthird-partypayers incurred incrementalcostsof 230043 during the same period. across all age categories mean totalout-of-pocketannualcostswere greater for individuals with ds than those of matched controls. on average parents ofchildrenwith ds pay an additional 84 per month forout-of-pocketmedicalexpenses whencostsare amortized over 18 years.>

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Authors

Kageleiry A, Samuelson D, Duh MS, Lefebvre P, Campbell J, Skotko BG