Current Allocation System for Heart Transplantation Might Disfavor Adults with Congenital Heart Disease. Interview with:

Dr. Laith Alshawabkeh MD ‎Senior Fellow Brigham & Women's and Boston Childrens Hospitals / Harvard Medical School

Dr. Laith Alshawabkeh

Dr. Laith Alshawabkeh MD
‎Senior Fellow
Brigham & Women’s and Boston Childrens Hospitals / Harvard Medical School What is the background for this study?

Response: As the number of adults living with congenital heart disease continues to increase, there is paucity of evidence on the trajectories and patterns of their comorbidities. In all, heart failure is the leading cause of death in this group of patients. Unfortunately, landmark trials and advances in medical therapy which promoted increase survival in patients with the usual heart failure (non-congenital) has not been translated into those with congenital heart disease. Heart transplantation remains one of the (if not the only) sustainable option for many patients with congenital heart disease at the end stage of heart failure. Recent studies have shown that adults with congenital heart disease who underwent transplantation experienced higher risk of postoperative mortality compared to their non-congenital counterparts; however, patients with congenital heart disease who survived the first year post-transplantation enjoyed significantly better long-term survival, indicating that with careful selection those patients might benefit tremendously from transplantation. Much less is known about the outcome of these patients while they are waiting for an organ. As such, this study sought to examine the outcomes of patients with congenital heart disease while listed for heart transplantation and to investigate correlates of adverse outcomes (mortality and delisting due to clinical worsening). What are the main findings?

Response: We found that patients with congenital heart disease listed at the highest priority status (1A) suffer the highest rate of adverse outcomes compared to those without congenital heart disease. Possible explanations are that, due to lack of robust evidence, many patients are listed for transplantation too late. Further, we found that abnormal kidney function (eGFR < 60 ml/min/1.73 m2), poor hepatic function (albumin < 3.2 g/dL) and hospitalization at the time of listing were factors that were predictive of the adverse outcomes. What should readers take away from your report?

Response: This is a wake-up call that seemingly stable congenital heart patients who have heart failure could be in fact at under-recognized risk of death. Certain factors (mentioned above) could serve as a red flag when caring for this growing group of patients. The current allocation system for heart transplantation in the United States might disfavor adults with congenital heart disease. What recommendations do you have for future research as a result of this study?

Response: Robust, collaborative multi-institutional research is urgently needed to examine the epidemiology and disease course for adults with congenital heart disease who experience heart failure. Thank you for your contribution to the community.


Note: Content is Not intended as medical advice. Please consult your health care provider regarding your specific medical condition and questions.

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