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Single Ventricle Infant Deaths Without Transplant Referral: Room for Improvement?
Lydia K Wright1, Antonio G Cabrera2, Sergio A Carrillo2
1Heart Center, Nationwide Children's Hospital, 700 Children's Dr, Columbus, OH, 43206, USA. Lydia.wright@nationwidechildrens.org.
Insights
Infants with hypoplastic left heart syndrome need timely heart transplant referrals. This study found no disparities in transplant referral or outcomes based on neighborhood opportunity, but identified key risk factors for better timing.
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.
Abstract:
Infants with hypoplastic left heart syndrome undergoing single ventricle (SV) palliation may need early heart transplant, but optimal referral timing is unknown, and referrals may be inequitable. We performed a retrospective study of infants undergoing stage 1 SV palliation (S1P) from 2016-2022 enrolled in the National Pediatric Cardiology-Quality Improvement Collaborative (NPC-QIC). Competing risk methods were used to evaluate predictors of Transplant Referral (TxR) and death without TxR. Neighborhood opportunity was determined through use of Child Opportunity Index (COI). A total of 2,960 infants were included. Infants from lower opportunity neighborhoods had lower median birth weights, were less likely to be prenatally diagnosed, and were more likely to require mechanical ventilation pre-operatively than those from higher opportunity neighborhoods. At one year, an estimated 79% of infants were alive, 16% had died, and 5% had a TxR, with no differences in outcomes by neighborhood opportunity or race. In multivariable analysis, neither neighborhood opportunity nor race was associated with either outcome when controlling for known risk factors. Pre-operative tricuspid regurgitation was most predictive of TxR and was also a major risk factor for death without TxR. Multiple non-cardiac risk factors were predictive of death without TxR. One-year survival after S1P approached 80%, though death without TxR was three times more common than TxR. No clear disparities were seen, though non-cardiac risk factors for death were more prevalent in those from lower opportunity neighborhoods. Standardized guidelines may help identify high risk infants who may benefit from earlier TxR.
