Single Ventricle Infant Deaths Without Transplant Referral: Room for Improvement?

Area of Science:

• Pediatric Cardiology
• Congenital Heart Disease
• Transplant Surgery

Background:

• Hypoplastic left heart syndrome (HLHS) requires single ventricle (SV) palliation.
• Optimal timing for heart transplant referral in these infants remains unclear.
• Potential inequities in transplant referral exist.

Purpose of the Study:

• To evaluate predictors of transplant referral (TxR) and death without TxR in infants undergoing stage 1 SV palliation (S1P).
• To assess the impact of neighborhood opportunity (using Child Opportunity Index - COI) and race on TxR and outcomes.
• To identify factors influencing the need for early heart transplantation.

Main Methods:

• Retrospective study of 2,960 infants undergoing S1P (2016-2022) from the National Pediatric Cardiology-Quality Improvement Collaborative (NPC-QIC).
• Competing risk methods were used to analyze TxR and death without TxR.
• Neighborhood opportunity and race were analyzed as potential covariates.

Main Results:

• One-year survival after S1P was approximately 79%, with 16% mortality and 5% TxR.
• No significant differences in TxR or outcomes were observed based on neighborhood opportunity or race.
• Pre-operative tricuspid regurgitation was the strongest predictor of TxR and death without TxR.
• Non-cardiac risk factors predicted death without TxR, and were more common in lower opportunity neighborhoods.

Conclusions:

• One-year survival after S1P approaches 80%, but death without transplant referral is significantly more common than referral.
• While no clear disparities were observed, non-cardiac factors impacting outcomes were more prevalent in lower opportunity areas.
• Standardized guidelines may improve identification of high-risk infants for earlier heart transplant consideration.