The 2016 revision of the US Pediatric Heart Allocation Policy (USPHAP) created more stringent rules for priority status. We evaluated the hypothesis that resultant differential status exceptions based on race contribute to racial disparities in waitlist outcomes.
The Scientific Registry for Transplant Recipients database was queried for children listed for first heart-alone transplant from January 2012 to June 2020. Waitlist status & mortality with regards to race were evaluated, stratified by listing before (Era 1) or after (Era 2) the policy change.
The use of both status 1A and 1B exceptions (E) increased in Era 2 (1A(E): 5% in Era 1 vs 12%, p<0.001; 1B(E): 6% vs 10%, p <0.001). In Era 1, there was no association between patient race/ethnicity and use of 1A(E) or 1B(E) when controlling for age and diagnosis. In Era 2, race/ethnicity was not associated with 1A(E) but was associated with 1B(E): non-Hispanic (NH) Black children were significantly less likely to be listed 1B(E) compared to NH White children (OR 0.46 [95% CI 0.31-0.68]) or Hispanic children (OR 0.52 [95% CI 0.33-0.84)) with similar ages and diagnoses. Among children initially listed status 1B or 2 in Era 2, those with status 1B(E) had lower waitlist mortality when controlling for age, diagnosis, and renal function (aHR 0.3 [95% CI 0.1-0.8]). In Era 1, there were no significant differences in waitlist mortality based on race/ethnicity at any waitlist status; in Era 2, however, NH Black children had higher waitlist mortality than NH White children when initially listed 1B or 2 (Figure 1).
Since the 2016 USPHAP change, racial disparities in waitlist mortality have worsened among children initially listed with lower priority status. While 1B(E) status is associated with lower mortality risk, a lack of exceptions being sought for Black children contributes to their higher mortality. Standardized exception guidance and pediatric specific review boards (both implemented after this study period) have the potential to improve equity.