Characteristics and outcomes of children determined to be noncandidates for heart transplant

Abstract

BackgroundChildren being considered for heart transplantation (HT) undergo structured evaluation to determine HT candidacy. Some are determined not to be candidates after evaluation, but outcomes in these patients are not well known. MethodsWe retrospectively reviewed patients evaluated for HT at our institution (freestanding children’s hospital) between 2013 and 2022. Patients who completed HT evaluation but were determined not to be candidates were identified. Clinical characteristics, reasons for non-candidacy, and outcomes of these non-candidates were described using summary statistics. ResultsDuring the study period, 264 patients were evaluated for HT. Of these, 75 patients (28.4%) were determined not to be candidates. The median age of non-candidates was 2.5 years. The most common diagnosis was single ventricle congenital heart disease (SV CHD) in 61.3%; cardiomyopathy was seen in 21.3%. The most common reason for non-candidacy was being too well for HT (36.7%), followed by too sick for HT (27.8%). With median follow-up duration of 3.5 years, 49.3% of patients were alive without undergoing HT; for non-candidates on the basis of being too well, 81.5% were alive without undergoing HT. Of the 36% of patients who died after determination of non-candidacy, 58.6% had SV CHD. ConclusionsA substantial proportion of children undergoing evaluation for HT are ultimately determined not to be candidates. Outcomes for non-candidates vary depending on the reason for non-candidacy. The majority of patients who died after determination of non-candidacy had single ventricle CHD, indicating opportunities for increasing access to HT and other advanced therapies in this patient population.