Congenital heart diseases involving congenitally diseased pulmonary valve phenotypes: Novel insights into the health care burden across the life course

Objectives We characterize comprehensive health care use and Medicaid expenditures for all patients in New York State (NYS) enrolled in Medicaid (2007-2019) with congenitally diseased pulmonary valve phenotypes across the life course. Methods We leverage The Congenital Heart Surgery Collaborative for Longitudinal Outcomes and Utilization of Resources linked clinical registry, National Death Index, and NYS Medicaid claims data and describe Medicaid expenditures and health care use across the life course for all patients with congenitally diseased pulmonary valves enrolled in Medicaid who underwent cardiac surgery. Outcomes are compared with noncardiac, Medicaid-enrolled, comparators. Results Among 1068 unique patients from NYS enrolled in Medicaid (7594 patient-years), the average patient with congenital pulmonary valve diseases was estimated to spend 851 days (∼2.3 years) touching the health care system before age 65 years, totaling ∼$2.9 M in Medicaid expenditures—6 times greater than that observed among noncardiac comparators. Inpatient, emergency department, sick primary care, and subspecialist visits and total Medicaid expenditures all peaked in infancy ($353 K per person-year; 95% CI, $316-390 K), nadired in childhood ($25 K per person-year; 95% CI, $23-26 K), and increased again in adulthood ($43 K per person-year; 95% CI, $42-54 K). Conclusions Children with congenitally diseased pulmonary valve phenotypes who are enrolled in Medicaid experience high health care use and health-related expenditures that persist across the life course and increase sharply in early and middle adulthood. These findings underscore the need for improved care coordination, novel disease-specific interventions, and policies to reduce long-term burden for this population.