Waitlist and post-transplant outcomes for children with myocarditis listed for heart transplantation over 3 decades
Section snippets
PHTS database
The PHTS database based at the University of Alabama, Birmingham has been collecting prospective, event-driven data on pediatric patients (age <18 years) undergoing HT listing since 1993.10 The PHTS currently includes over 50 international HT centers. Institutional Review Board approval is maintained at each participating institution. Strengths of PHTS include the detailed pre and post-transplant information for all listed recipients, the completeness of the data and granular information
Study cohort
Of 9755 children listed during the study period, 322 (3.3%) had myocarditis and 3178 (32.6%) had DCM (Figure 1). Of 322 children listed with myocarditis, 168 (52.2%) were listed in the early era and 154 (47.8%) were listed in the current era; of 3178 children listed with DCM, 1298 (40.8%) were listed in the early era and 1880 (59.2%) were listed in the current era. There were 102 patients listed as DCM developing after myocarditis. Demographic and clinical characteristics for this DCM s/p
Discussion
There are several important findings in our multi-center analysis of children with myocarditis over 3 decades: (1) children with myocarditis listed for HT have a higher severity of illness at listing and at HT compared to those with DCM (2) myocarditis was an independent risk factor for post-HT graft loss, but not waitlist mortality (3) children with myocarditis are more likely to recover while awaiting HT, in particular those younger (age <5 years) and with a more fulminant presentation at
Study limitations
Ours is a registry analysis and hence is subject to the inherent limitations associated with utilizing this approach. For example, any misclassifications in diagnosis (myocarditis or DCM) could certainly lead to incorrect adjudication, which can affect our results. More importantly, PHTS does not collect data on how myocarditis was diagnosed – by endomyocardial biopsy or cardiac magnetic resonance imaging and while we demonstrated that the clinical characteristics of the myocarditis cohort and
Conclusions
Children with myocarditis have a higher acuity of illness at listing and at HT and have increased post-HT graft loss compared to children with DCM. Outcomes for children with myocarditis have not improved over 3 decades and efforts are needed to improve outcomes for this specific cohort. Children with myocarditis requiring ECMO support have the worst waitlist and post-HT survival. Racial disparities are noted in outcomes for children with myocarditis undergoing HT and needs further exploration.
Disclosure statement
J.K.K. received partial support as principle investigator of the INTERMACS NHLBI-sponsored Registry for U.S. mechanical circulatory support (funding paid through institution). All other authors have nothing to disclose.
Authors’ contributions
All authors have contributed to the design, interpretation of data; drafting of the manuscript along with revisions; and participated in the final approval of the manuscript submitted.
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