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Feb 11, 2016

Growing Need for Heart Transplants in Adults with Congenital Heart Disease

Experts highlight the challenges faced by this population when it comes to receiving advanced therapies.

As people with congenital heart disease are living longer than ever before, the need for heart transplants and other advanced therapies continues to climb, according to a recent statement from the American Heart Association.

Published in the association’s journal Circulation, this paper addressed the growing need for advanced treatments in adults living with congenital heart disease. Since 1999, the proportion of adults with congenital heart disease receiving heart transplants has increased by 41%. However, not all adults with congenital heart disease receive the care they need, especially when it comes to heart transplants and other therapies.

In this recent statement, “Transplantation and Mechanical Circulatory Support in Congenital Heart Disease”, experts highlight the many challenges faced by congenital heart disease patients in need of transplants.

According to authors, many adults with congenital heart disease develop heart failure, which occurs when the heart can’t pump enough blood to the rest of the body. As a result, many patients require heart transplants and/or devices that help the heart pump blood to the rest of the body. Devices like a VAD (ventricular assist device) can not only help patients that are too sick for a heart transplant, they can improve heart function while patients wait for a transplant. The problem is that guidelines for these treatments in patients with congenital heart disease are sparse. As a result, not all adults with congenital heart disease get the care they need to improve survival and outcomes.

In general, all patients in need of a heart transplant are added to a national waiting list for a donor heart. However, patients with congenital heart disease are less likely to receive a heart transplant than patients without this condition. They are also more likely to be listed at lower urgency status and less likely to have a status upgrade in the national waiting list. Data suggests that adults with congenital heart disease are less likely to receive heart devices while waiting for transplants.

Interestingly, however, research shows that adults with congenital heart disease have better long-term outcomes after transplantation than those with other conditions.

Of course, authors also point out that data on transplants and advanced treatments in adults with congenital heart disease is sparse. Nearly everything we know about this topic comes from national registries and data that’s unique to single health centers. Consequently, authors highlight the need for clinical trials and other research to further our understanding of treatment in adults with congenital heart disease. With future research, experts hope to improve treatment and help adults with congenital heart disease live longer, healthier lives.

Questions for You to Consider

  • What are congenital heart defects?
  • Congenital heart defects refer to a number of different conditions that can occur when a baby’s heart is forming or at birth. Although most defects are found during pregnancy or in early childhood, some defects aren’t discovered until adulthood. Survival rates depend on the severity of the heart defect, but most individuals with congenital heart defects live long and healthy lives.
  • What is a heart transplant?
  • A heart transplant is surgery used to replace a damaged or diseased heart with a healthy donor heart. It may be performed in patients with severe chest pain (angina), heart failure, an abnormal heartbeat (arrhythmia) or severe heart defects.


Resources to Help You Compare Treatment Options

Guidance from the Agency for Healthcare Research and Quality (AHRQ) in making health decisions

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