Unveiling the Healthcare Journey of Patients with Hypoplastic Left Heart Syndrome: From Birth to Adulthood.

ObjectiveWhile many studies view patients with hypoplastic left heart syndrome (HLHS) through the lens of financial burden, an overall sense of the medical burden of these patients has rarely been reported. We sought to introduce a granular analysis of the medical burden of patients with HLHS to capture a view of their journey to adulthood.MethodsChildren with HLHS (≤18 years) born from 2004 to 2008 with 18 years of follow-up were identified in the Pediatric Health Information System (PHIS). Children who did not have 18 years of complete follow-up were excluded.ResultsBy 1 year of age, a child with HLHS had a total median number of visits of 4 (3-6), length of stay (LOS) of 52 days (d) (29-87), 2 (1-3) cardiac catheterizations, 55 (42-74) unique drugs, and 4% cardiac transplant prevalence. By 5 years of age, a child with HLHS had a total number of visits of 10 (6-18), LOS of 73d (46-119), 3 (2-6) cardiac catheterizations, 89 (70-132) unique drugs, and a 10% cardiac transplant prevalence. By 10 years of age, a child with HLHS had a total number of visits of 18 (8-35), LOS of 85d (54-147), 5 (3-8) cardiac catheterizations, 120 (97-178) unique drugs, and an11% cardiac transplant prevalence. By 18 years of age, an adult with HLHS had a total number of visits of 44 (17-80), LOS of 154d (83-264), 9 (5-12) cardiac catheterizations, 139 (127-220) unique drugs, and a 19% cardiac transplant prevalence.ConclusionThe present report offers detailed insight into the medical burden of patients with HLHS and can serve as a reference to inform patients and families of the journey.