Pediatric cardiologists at the Miller School of Medicine are partnering with 14 institutions around the nation to study the impact of health care gaps on the health and well-being of adults with congenital heart disease (CHD).
As identification, understanding, and treatment of CHD have improved in recent decades, the number of adults living with CHD—estimated at some 150,000—now exceeds the number of children who are currently born with these structural cardiac defects. However, little is known about long-term outcomes for these adults, most of whom are not receiving appropriate levels and continuity of care.
Supported by a $4.9 million award from the Patient-Centered Outcomes Research Institute (PCORI), the study will gather data on patients aged 18 years and older who have a CHD diagnosis. The goal is to identify the needs of patients with different subtypes of CHD and barriers to adequate care.
“Long-term survival of patients with congenital heart disease has dramatically improved over the last 50 years, so the number of adults with congenital heart disease is increasing,” said Satinder Sandhu, M.D., pediatric cardiologist and adult congenital heart disease certified physician, who is leading the study at UM. “Adults with congenital heart disease require a multidisciplinary team approach with experienced and dedicated adult congenital heart disease practitioners.”
Led by the Louisiana Public Health Institute and Children’s National Hospital, the study draws on the vast health data resources of PCORnet®, the National Patient-Centered Clinical Research Institute. With access to the health records of 66 million patients for observational studies, the PCORI-funded PCORnet provides vast scale to power research on an array of diseases and conditions.
This new research project leverages the first patient registry for adults with CHD—the Congenital Heart Initiative. Patients recruited for the study will participate via enrollment in the registry, allowing researchers to ask them directly about health, wellness, and any specific barriers to care.
The study will combine clinical data with patient-reported data to help guide health care providers in caring for the unique needs of this population throughout their lives.
PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund clinical effectiveness research that provides patients, their caregivers and clinicians, and other health care decision-makers and stakeholders with evidence-based outcomes data to facilitate better-informed health care choices.