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Transition of Care for Congenital Heart Patients: Challenges, Opportunities, and Pathways for Provid

Updated: May 7


Wayne J. Franklin, MD

It wasn’t long ago when Congenital Heart Defects (CHDs) were a critical condition for the vast majority of pediatric patients. In the 1940’s, the survival rate for highly complex conditions was lower than 10%. However, breakthroughs in the detection and treatment of CHD have reversed the prognosis for children born with severe defects. Now, where treatment is available, more than 90% of infants born with CHD survive into adulthood.


In many ways, these advancements underscore the tremendous potential of modern medicine. Congenital Heart Disease (CHD) often can be diagnosed in utero through fetal echocardiology, allowing clinicians to assess the presence and complexity of heart defects prior to birth and create an intervention plan. In cases like tachycardia, medication can be delivered in utero. Post birth, advances in neonatal heart surgery have improved outcomes for infants born with CHD, giving them a shot at a normal lifespan. Even in premature infants weighing fewer than five pounds, surgical options to repair heart problems are often possible.


FIGURE 1 The graph shows that as children with chronic disease grow up, they are seen less frequently by a pediatric cardiologist.



In many ways, these advancements underscore the tremendous potential of modern medicine. Congenital Heart Disease (CHD) often can be diagnosed in utero through fetal echocardiology, allowing clinicians to assess the presence and complexity of heart defects prior to birth and create an intervention plan. In cases like tachycardia, medication can be delivered in utero. Post birth, advances in neonatal heart surgery have improved outcomes for infants born with CHD, giving them a shot at a normal lifespan. Even in premature infants weighing fewer than five pounds, surgical options to repair heart problems are often possible.


This transformation is encouraging for patients and their doctors, but it’s also the root of a trend that presents new challenges for health systems in providing ongoing care for patients living with Adult Congenital Heart Disease (ACHD).


For example, a shortage of cardiologists trained to treat ACHD means that many patients must travel far for the care they need. Indeed, approximately two-thirds of people living with moderate or complex CHD are over 18 years old. This means an estimated 1.3 million adults in America are living with the condition. Yet, few cardiologists possess the specialized knowledge and experience to treat this growing group of patients. This is especially concerning when you factor in the unique health challenges of adult patients with CHD, including the risks associated with pregnancy, exercise and vulnerability to critical heart episodes.

In response to the scarcity of providers serving this new and expanding group of patients, the American Congenital Heart Association (ACHA), the American College of Cardiology (ACC), and the American Heart Association (AHA) have launched a program to accredit hospitals in the treatment of ACHD. The nine-month process evaluates hospitals on 43 criteria, each tied to precise metrics, and includes a site visit to assess compliance with best practices in the field.


Additionally, the American Board of Internal Medicine (ABIM) and the American Board of Pediatrics (ABP) have created a certification exam for doctors seeking to treat patients with ACHD.


Approximately 308 doctors have passed this exam, and more than 20 hospitals have become ACHD-certified. While these initiatives show enormous potential, the relatively small number of certified programs and doctors, when compared to the demand among ACHD patients, continues to be a challenge for health systems.


Further, the challenges do not end once a cardiologist earns certification in treating ACHD. Increasingly, hospitals are noting and addressing difficulties in transitional care for pediatric patients reaching adulthood – in CHD and across all disease groups.


Usually, young adulthood is the time of life when patients are shifting their routines, moving out of the family home, attending college, and even aging out of their parents’ health insurance coverage. Lifestyle changes including diet, alcohol consumption, and physical activity outside of a supervised environment are also common.


Studies also indicate that patients often experience stress, frustration, feelings of isolation and other psychological effects as they confront the challenges of transitioning to adulthood while balancing a chronic illness.



To read the full article, please go to the April 2019 Issue of CCT.

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