Abstract 18025: No Improvement in Outcomes for Adults With Congenital Heart Disease Listed for Heart Transplantation at the Lowest Priority Status in the United States 1986 - 2014
Introduction: Advances in medical therapy have improved survival for patients with chronic heart failure (HF), including those listed at low priority for heart transplantation. Adults with congenital heart disease (ACHD/CHD) are at risk of heart failure as they age but, unlike in those without CHD, there are no disease-specific evidence based medical therapies.
Hypothesis: The probability of adverse outcomes (death or delisting due to clinical worsening) for ACHD listed at status 2 did not improve over time, in contrast to the trend for patients without CHD.
Methods: This was a retrospective study that used the Scientific Registry for Transplant Recipients database on participants ≥ 18 years old listed for heart transplantation in the United States between 1986 and 2014. Cumulative incidence functions were used to estimate 1-year probability of death or delisting due to clinical worsening, with transplantation as a competing outcome.
Results: Among ACHD heart transplantation candidates, there were 359 and 1,290 listed before and after 1999; this figure was 22,110 and 38,557 for non-ACHD, respectively. There was improvement in the probability of the primary outcome in the current compared to the early era for both ACHD (13.2% vs. 18.6%, p=0.01) and non-ACHD (12.1% vs. 15.9%, p<0.0001) patients. However, this improvement was unevenly distributed. While there was an improvement for non-ACHD listed at status 2 in the current vs. the early era (9.0% vs. 12.8%, p=0.005), this improvement was not apparent for ACHD patients (10.4% vs. 10.6%, p=0.94), Figure.
Conclusions: Despite advances in care for patients without CHD, there has been no improvement in adverse outcomes for ACHD patients listed for heart transplantation as status 2. Absence of proven medical therapy for chronic HF in ACHD likely explains these findings. Risk stratification is challenging in the absence of data on prognostic markers in this seemingly, but perhaps misleadingly, more stable group of patients.
Author Disclosures: L. Alshawabkeh: None. K.D. Carter: None. H.L. Bartlett: None. A.R. Opotowsky: None.
- © 2016 by American Heart Association, Inc.