Adult Congenital Team Develops New Growth Strategies

Specialists prepare for increasing numbers of patients

Provider listening to a patient's heart

The Duke Adult Congenital Heart Center is expanding therapeutic options for patients with congenital heart disease (CHD) as clinical leaders prepare to manage a surge in patients.

Working closely with the Pediatric Congenital Heart Team and several other subspecialties, leaders of the adult congenital program have analyzed and adopted new methods to help patients transition from pediatric to adult CHD care while launching new clinics to incorporate novel therapeutic approaches.

The number of adults with CHD in the U.S. grows by approximately 40,000 patients annually, says Richard A. Krasuski, MD, director of the Duke Adult Congenital Heart Center, and now totals more than two million.

"Our collaboration with the Duke Pediatric Team has helped to identify higher risk populations that require more specialized care," Krasuski says. "This group includes patients born with single ventricles palliated with Fontan surgery. Many of these patients develop problems that involve many organ systems, sometimes even requiring organ transplantation."

Krasuski says the team has developed clinics for Fontan management and heart failure/transplantation assessment and management.  The pediatric-adult partnership also creates a seamless clinical transition for patients who require adult care.

"It’s a very complex population that is steadily growing," Krasuski says. "This transition is critical period in the life of a young adult. Our team-based approach helps patients make the transition safely and smoothly."

Patient care extends throughout the lifespan, and Duke’s record of novel clinical interventions—new medications, stents or pioneering surgical procedures—has helped the center serve older patients with CHD more effectively.

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Caring for pediatric and adult patients

Ziv Beckerman, MD, a cardiothoracic surgeon recruited from the Dell Children’s Medical Center in Austin, TX, to provide surgical expertise for both pediatric and adult patients, notes the changing demographics of CHD care.

"Most centers that treat congenital heart defects are either standalone pediatric hospitals or adult centers," Beckerman says. "The programs are not fully integrated and usually lack the specialists to offer a lifetime of care. But Duke is building a center of excellence to serve both populations."

"There are now more adults with CHD in the U.S. than there are children because we have become so proficient with the pediatric surgeries to correct congenital conditions," Beckerman says. "Outcomes have improved significantly, and most children with heart defects survive to adulthood."

The patients’ long-term survival, however, presents new challenges for medical and surgical congenital teams: "It’s a brand new patient population," Beckerman says. "We face distinctive challenges in planning for long-term care. Duke is preparing to meet these challenges."

As a result of the success of Duke’s congenital disease programs, the pediatric heart program is ranked as the seventh highest program in the United States, according to U.S. News & World Report. The rankings were based in part on survival outcomes following complex surgeries such as transplants or corrective surgery for congenital heart defects.