Disparities in Wait-List Outcomes for Adults With Congenital Heart Disease Listed for Heart Transplantation Before and Since Revision of Status I Listing.

ABSTRACT

Medical and surgical advances in the late 20th century that allowed the majority of children born with congenital heart disease (CHD) to survive have resulted in a shift of the burden of morbidity and mortality into adulthood. Heart failure is the leading cause of death in adults with CHD. This study aimed to address the gap in understanding of outcomes of adults with CHD who have heart failure and are listed for heart transplantation compared with those without CHD. The study analyzed data from the US Scientific Registry of Transplant Recipients database, categorized by the listing era (on/before or after January 19, 1999). The primary combined outcome was death while waiting for an organ or delisting due to worsening clinical condition. Overall, there was a significant decrease in the probability of the primary outcome in the current compared with the early era for both adults with CHD (13.2% vs 18.6%, p = 0.01) and non-CHD (12.1% vs 15.9%, p < 0.0001). However, this improvement was only observed among adults with CHD listed in Status I, whereas adults without CHD saw significant improvement in both statuses I and II. Furthermore in the current era, when compared with their non-CHD counterparts, adults with CHD continue to have worse wait-list outcomes irrespective of listing status. In conclusion, outcomes for adults with CHD listed for heart transplantation have improved since the revision of Status I listing in 1999. Despite such improvements there continues to be a significant disparity in wait-list outcomes between adults with compared with those without CHD.