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 1st 1986 to December 31st 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 <1 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 an etiology of congenital heart disease compared with cardiomyopathies. Era of listing was a 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 waiting 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.

Keywords: End-stage heart failure; Era-dependent analysis; Long-term outcomes; Pediatric heart transplantation; Scandiatransplant.