Acute care utilization for inherited metabolic diseases among children identified through newborn screening in New York state

Background: Currently, very few studies on long-term follow up of health outcomes and health-care utilization of children with inherited metabolic disorders identified through newborn screening are available. In this project, we analyzed acute care utilization for children with inherited metabolic disorders. Methods: A cohort of children up to 3 years of age who were born to New York State residents in 2006-2007 with confirmed inherited metabolic disorders identified through newborn screening, was linked to hospital discharge records. For children with multiple acute care encounters (emergency department visits and/or hospital inpatient stays), rehospitalization intervals were quantified as days between a discharge date and the next encounter. Results: Inherited metabolic disorder-related hospital care encounters were more frequent for non-Hispanic black children, Medicaid recipients, and children of younger mothers. A majority (similar to 73%) of the children without health insurance had inherited metabolic disorder-related emergency department visits. Children with private insurance were more likely to have hospital stays. Hospital acute care utilization patterns differed with respect to inherited metabolic disorder category. Children with fatty acid oxidation disorder or organic acid disorders required the most care. Conclusions: The information collected by the unique population-based surveillance program about hospital care utilization for the affected children can be helpful in assessing health outcomes of the children, identifying at-risk populations, and improving access to essential medical services for children in need.