UF Health Congenital Heart Center https://www.ufhealth.org & OneFlorida+ Clinical Research Network https://onefloridaconsortium.org have joined a national study to examine how gaps in healthcare can affect the health and well-being of adults with congenital heart disease.
The study is being funded by a four year $4.9 million award from the Patient-Centered Outcomes Research Institute (PCORI) https://www.pcori.org in Washington D.C. The study is being administered by researchers at Children’s National Hospital in Washington D.C. https://childrensnational.org and the Louisiana Public Health Institute in New Orleans.
According to Dr. Arwa Saidi, Cardiologist at UF Health and the UF Health Congenital Heart Center https://chi.eurekaplatform.org, “Congenital Heart Disease (CHD) is caused by abnormalities of the heart that develop before birth, such as abnormal connections, single ventricles, or a hole in the heart.”
There have been improvements in treatment over the past 50 years, however, more children 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. According to Dr. Saidi, “Many adult CHD patients see a cardiologist only after developing symptoms or complications from their cardiac condition.”
Study teams at 14 research sites across the U.S., 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 from adults 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 will 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, which is the first patient-powered registry for adults with congenital heart disease. The Registry 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. The survey data will help researchers and clinicians gain a deeper understanding of adult CHD patients. The researchers hope the study will help predict which patients are at greater risk of falling out of routine healthcare and when these gaps in care are likely to occur in a patient’s lifespan.