The Dutch national paediatric heart transplantation programme: outcomes during a 23-year period

• Published in: Netherlands heart journal Vol. 31; no. 2; pp. 68 - 75
• Main Authors: Roest, Stefan, van der Meulen, Marijke H., van Osch-Gevers, Lennie M., Kraemer, Ulrike S., Constantinescu, Alina A., de Hoog, Matthijs, Bogers, Ad J. J. C., Manintveld, Olivier C., van de Woestijne, Pieter C., Dalinghaus, Michiel
• Format: Journal Article
• Language: English
• Published: Houten Bohn Stafleu van Loghum 01.02.2023; Springer Nature B.V
• Subjects: Cardiology; Congenital diseases; Cytomegalovirus; Medical Education; Medical imaging; Medicine; Medicine & Public Health; Mortality; Original; Original Article; Pediatrics; North America; Netherlands; Europe; Children; Waiting list; Heart transplantation; Mortality
• ISSN: 1568-5888; 1876-6250
• DOI: 10.1007/s12471-022-01703-w

Background Since 1998, there has been a national programme for paediatric heart transplantations (HT) in the Netherlands. In this study, we investigated waiting list mortality, survival post-HT, the incidence of common complications, and the patients’ functional status during follow-up. Methods All children listed for HT from 1998 until October 2020 were included. Follow-up lasted until 1 January 2021. Data were collected from the patient charts. Survival, post-operative complications as well as the functional status (Karnofsky/Lansky scale) at the end of follow-up were measured. Results In total, 87 patients were listed for HT, of whom 19 (22%) died while on the waiting list. Four patients were removed from the waiting list and 64 (74%) underwent transplantation. Median recipient age at HT was 12.0 (IQR 7.2–14.4) years old; 55% were female. One-, 5‑, and 10-year survival post-HT was 97%, 95%, and 88%, respectively. Common transplant-related complications were rejections (50%), Epstein-Barr virus infections (31%), cytomegalovirus infections (25%), post-transplant lymphoproliferative disease (13%), and cardiac allograft vasculopathy (13%). The median functional score (Karnofsky/Lansky scale) was 100 (IQR 90–100). Conclusion Children who undergo HT have an excellent survival rate up to 10 years post-HT. Even though complications post-HT are common, the functional status of most patients is excellent. Waiting list mortality is high, demonstrating that donor availability for this vulnerable patient group remains a major limitation for further improvement of outcome.