By Diana Tonnessen

Researchers at UF Health, the UF Health Congenital Heart Center and the OneFlorida+ Clinical Research Network have joined a national study to examine how gaps in health care affect the health and well-being of adults with congenital heart disease.

Congenital heart disease, or CHD, is one of the most common types of birth defects, according to Arwa Saidi, a congenital cardiologist at UF Health and the UF Health Congenital Heart Center. Congenital heart disease is caused by abnormalities of the heart that develop before birth, such as such as abnormal connections, single ventricles or a hole in the heart. 

Thanks to improvements in treatment over the past 50 years, more children who are affected with these conditions are surviving into adulthood. But many teenagers and young adults with CHD do not always receive the recommended care from a congenital cardiac specialist, Saidi said.

“Many adult CHD patients see a cardiologist only after developing symptoms or complications from their cardiac condition,” she said.

Saidi will serve as UF Health site principal investigator for the study, which is being administered by researchers at Children’s National Hospital in Washington, D.C., and the Louisiana Public Health Institute in New Orleans. The study is funded by a four-year, $4.9 million award from the Patient-Centered Outcomes Research Institute, or PCORI, in Washington, D.C.

Study teams at 14 research sites across the country, including UF Health and OneFlorida+ partners the University of Miami and Nicklaus Children’s Hospital in Miami, will leverage the health records for 66 million patients to gather data on adults ages 18 and older with a CHD diagnosis. The researchers will analyze the data to determine which adult patients are still receiving the recommended care by a cardiologist and which ones are not. They’ll also use the data to determine rates of complications and related illnesses for these patients.  

Additionally, patients will be invited to enroll in the Congenital Heart Initiative registry, the first patient-powered registry for adults with congenital heart disease, which aims to help patients and physicians learn more about adult congenital heart disease, guide future research and improve treatment.

Those who enroll will receive brief surveys every six months asking how they feel and whether they have faced any barriers to getting specialized care. Survey data will help researchers and clinicians gain a deeper understanding of adult CHD patients and the challenges they face.

“This unprecedented look at the health of adults living with congenital heart disease allows us to get a full spectrum view by combining clinical data with patient-reported health data,” said Thomas Carton, Ph.D., LPHI chief data officer and principal investigator. The study is led by Carton and Anitha John, M.D., Ph.D., medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital.

The researchers hope the study findings will help predict which patients are at greater risk of falling out of routine health care and when these gaps in care are likely to occur in a patient’s lifespan.

“With the increasing number of adult patients with CHD, it is important for us to understand how current recommended practices influence patient outcomes,” John said. “This project will guide us on how to best care for our patients, not just through childhood, but across their entire lifespans.”