The Financial Impact of Genetic Diseases in a Pediatric Accountable Care Organization

Background: Previous studies revealed patients with genetic disease have more frequent and longer hospitalizations and therefore higher healthcare costs. To understand the financial impact of genetic disease on a pediatric accountable care organization (ACO), we analyzed medical claims from 2014 provided by Partners for Kids, an ACO in partnership with Nationwide Children's Hospital (NCH; Columbus, OH, USA). Methods: Study population included insurance claims from 258,399 children. We assigned patients to four different categories (1-A, 1-B, 2, & 3) based on the strength of genetic basis of disease. Results: We identified 22.7% of patients as category 1A or 1B- having a disease with a “strong genetic basis” (e.g., single gene diseases, chromosomal abnormalities). Total ACO paid claims in 2014 were $379M, of which $161M (42.5%) was attributed to category 1 patients. Furthermore, we identified 23.3% of patients as category 2- having a disease with a suspected genetic component or predisposition (e.g., asthma, type 1 diabetes)- whom accounted for an additional 28.6% of 2014 costs. Category 1 patients were more likely to experience at least one hospitalization compared to category 3 patients- those without genetic disease [odds ratio [OR] = 4.12; 95% confidence interval [CI] = 3.86–4.39; p < 0.0001]. Overall, category 1 patients experienced nearly five times the number of inpatient (IP) admissions and twice the number of outpatient (OP) visits compared to category 3 patients (p < 0.0001). Conclusion: Nearly half (42.5%) of healthcare paid claims cost in 2014 for this study population were accounted for by patients with single-gene diseases or chromosomal abnormalities. These findings precede and support a need for an ACO to plan for effective healthcare strategies and capitation models for children with genetic disease.