Pediatric Heart Transplantation within the Scandiatransplant Region - A Multinational Observational Study Spanning 38 years.

Abstract

Background: Thirty-eight years of pediatric heart transplantation (pHTx) within the Scandiatransplant organization were analyzed to describe volume trends, regional prevalence, underlying etiologies and outcomes following listing and pHTx.

Methods: Children <18 years listed for pHTx from January 1^st 1986 to December 31^st 2023 were identified in the Scandiatransplant registry. The cohort was split into groups based on the era of listing (ERA I; 1986 - 1998, ERA II; 1999 - 2011, and ERA III; 2012 - 2023).

Results: A total of 597 children were listed and 461 (77.2%) reached pHTx. The regional incidence of pHTx was 4.0 per 100,000 live births. All centers performed a median of <4 pHTx per year. 6.5% were transplanted at less than one year of age. Waiting list duration increased over time, withdrawal frequency remained stable, and listing mortality decreased from 22.8% in ERA I to 6.8% in ERA III. The distribution of listing and transplant diagnoses were not different between eras. ABO-incompatible transplants increased over time, from 1.0% in ERA I to 8.8% in ERA III, as did transplant from ventricular assist devices (6.6% in ERA I, 19.9% in ERA III). Post-transplant survival was 78.0% at 10 years and 51.4% at 30 years. Survival was worse in patients with etiology of congenital heart disease compared with cardiomyopathies. Era of listing was determinant of listing mortality, but not of post-transplant survival.

Conclusions: Numbers of pHTx in the Scandiatransplant region are low but have increased with time. There has been a significant decrease in wait list mortality over time, whereas improvements in post-pHTx outcomes have been less evident, most likely due to excellent short-term outcomes for the first graft recipients in the region.