How Cincinnati Children’s Is Changing Outcomes for Patients with Congenital Heart Defects

CCHMC is building a new learning network to assess long-term complications of a procedure for people born with a variety of congenital heart defects.

Illustration by Myriam Wares

A doctor at Cincinnati Children’s Hospital Medical Center (CCHMC) is at the helm of a new learning health network that will assess the long-term complications of a procedure for people born with a variety of congenital heart defects.

Alexander “Sasha” Opotowsky, M.D., director of the Adult Congenital Heart Disease Program at CCHMC, has been named executive codirector of the Fontan Outcomes Network, which serves a broad community of families, doctors, and researchers working to improve quality of life for people with Fontan circulations.

Typically used for children born with hypoplastic left heart syndrome, the Fontan procedure—really, a series of procedures—is a palliative surgery that diverts the flow of blood in the heart so that it reaches the pulmonary arteries without passing through the right ventricle. After the procedure is completed, blood flows through the lungs without having to pump through the heart.

Today, more than 70,000 people with single ventricle congenital heart defects live with a Fontan circulation. But patients also live with the lasting complications of the procedure, which was developed in the late ’60s. The surgeries have been refined in recent years, but there’s still a considerable amount doctors don’t know about life after the Fontan procedure.

“[Patients] are living great lives a lot of the time,” Opotowsky says. “But they also live with a lot of uncertainty.”

Opotowsky, who typically works with adult patients, says that individuals living with a Fontan circulation tend to suffer a heavy burden of premature complications. In the second, third, and fourth decades of life, patients have a high risk of developing cardiac complications, like arrhythmia or heart failure, or even non-cardiac complications, like liver cancer and cirrhosis.

“They also tend to suffer complications that are not well understood, and that we very admittedly don’t deeply understand, both from a biological perspective, but also then from a therapeutic perspective,” he says. “Any provider who cares for people with congenital heart disease…has a tangible feeling of how we are not serving these patients as well as we wish we could. And there’s a real pressing feeling of obligation and desire to improve that state of affairs.” That’s where the Fontan Outcomes Network (FON) comes in.

The FON is just one of a dozen similar networks housed within the James M. Anderson Center at CCHMC. Dubbed a “lifespan learning health network,” the FON operates across 12 care centers—CCHMC included—to create a registry that will track patients over the course of their lifetimes, using data and research to answer questions and help provide a roadmap to bettering longevity and quality of life.

The network’s goals are ambitious: Within its first three years, the FON hopes to engage 50 care centers and enroll 10,000 patients in its HIPAA-compliant data registry to better understand the big picture and identify opportunities to improve care.

“It’ll have enormous value and have the potential to truly transform our understanding of this circulation,” Opotowsky says. “Children’s has developed this expertise in learning health networks that, both in cardiology and in other fields, has advanced the care for a lot of complex diseases. It’s just truly amazing. It really has been pioneered here.”

 

Alexander Opotowsky, M.D.

Cardiologist, Cincinnati Children’s Hospital Medical Center

Director, Adult Congenital Heart Disease Program

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