Characteristics and outcomes of children determined to be noncandidates for heart transplant
Sarah Bell, BS,
Justin Berger, MD, PhD,
Carley Boyle, CRNP,
Jonathan B. Edelson, MD,
Jonathan J. Edwards, MD,
Lynne Ha, CRNP,
Kimberly Y. Lin, MD,
Katsuhide Maeda, MD, PhD,
Joseph W. Rossano, MD, MS, MHCM,
Carol A. Wittlieb-Weber, MD,
Rachel White, RN,
Matthew J. O’Connor, MD
Affiliations
Sarah Bell, BS
University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania
Justin Berger, MD, PhD
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Carley Boyle, CRNP
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Jonathan B. Edelson, MD
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Jonathan J. Edwards, MD
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Lynne Ha, CRNP
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Kimberly Y. Lin, MD
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Katsuhide Maeda, MD, PhD
Division of Pediatric Cardiothoracic Surgery, Department of Surgery, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Joseph W. Rossano, MD, MS, MHCM
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Carol A. Wittlieb-Weber, MD
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Rachel White, RN
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
Matthew J. O’Connor, MD
Division of Cardiology, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania; Corresponding author. Matthew J. O’Connor, MD, Division of Cardiology, Children’s Hospital of Philadelphia, 3401 Civic Center Blvd, Philadelphia, PA 19104.
Background: Children 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. Methods: We 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 noncandidacy, and outcomes of these noncandidates were described using summary statistics. Results: During 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 noncandidates 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 noncandidacy 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 noncandidates on the basis of being too well, 81.5% were alive without undergoing HT. Of the 36% of patients who died after determination of noncandidacy, 58.6% had SV CHD. Conclusions: A substantial proportion of children undergoing evaluation for HT are ultimately determined not to be candidates. Outcomes for noncandidates vary depending on the reason for noncandidacy. The majority of patients who died after determination of noncandidacy had SV CHD, indicating opportunities for increasing access to HT and other advanced therapies in this patient population.
