Equity and center variation in listing status exceptions for pediatric heart transplant candidates since pediatric review board implementation

Abstract

Background: A pediatric national heart review board (NHRB) and exception guidance document to standardize decision-making were implemented in 2021 to reduce variability and ensure equity in status exceptions for pediatric candidates. We evaluated the hypothesis that these changes decreased center variability and racial disparities within the granted exceptions.

Methods: Guidance document and pediatric NHRB were operational by February and June 2021, respectively. Candidates were stratified by listing date into: Era 1, pre-policy changes (July 2018 - June 2020) and Era 2, post-policy changes (July 2021 - June 2023). Mixed effects logistic regression models evaluated individual and center-level predictors of receiving status 1A and 1B exceptions (E) pre- and post-policy implementation.

Results: Of 1,275 Era 1 listees, 15% received a 1A(E), with significant center variation. Black listees had lower likelihood of receiving 1A(E) (OR 0.57 [95% CI 0.34 - 0.94]), controlling for age, diagnosis, and center effects. Among 1,369 Era 2 listees, 14% received status 1A(E). Race was not associated with 1A(E), when controlling for the same variables, and center effect was not significant. While children listed 1B(E) increased from 12% to 16% from Era 1 to Era 2, in both eras, Black children were less likely to receive 1B(E) (OR 0.56 [95% CI 0.33 - 0.94) in Era 1, and 0.56 [0.34 - 0.91]) in Era 2). Center effect was significant in both eras.

Conclusions: Since implementing exception guidance and a pediatric review board, variation by center and patient race/ethnicity in 1A exceptions has been reduced. Center variation and racial disparities persist among 1B exceptions.

Keywords: disparities; listing policy; listing status exceptions; national heart review board; pediatric heart transplant.