The Herma Heart Institute at Children’s Wisconsin is one of the leading centers in a Multi-Institutional Neurocognitive Discovery Study (MINDS) to research the long-term neurocognitive impact of congenital heart defects. This $1.2 million study is the first study of its kind for adult congenital heart community.
Heart defects are the most common form of birth defect, affecting about 1 percent of all births in the United States. Prior to about 1944, most children born with congenital heart disease simply didn’t survive. Even in the late 1980s, the percentage of children born with severe cardiac defects who died within the first year of life was 25 percent. Thanks to medical advancements, today more than 85 percent of these children survive into adulthood. In the United States, there are an estimated 1.4 million adults living with congenital heart disease.
These improved outcomes have created a new population of adults who require unique, lifelong medical care and management. This study, sponsored by the National Heart, Lung, and Blood Institute (NHLBI), will investigate neurocognitive deficits in adults with congenital heart defects.
“Neurocognitive deficits include things like mild cognitive impairment, impaired social interaction and communication skills. These conditions have been reported in children and adolescents but relevant data in adults is lacking,” said Scott Cohen, MD, certified adult congenital heart disease specialist and one of the principal investigators for the study. “Adults with a congenital heart defect are reported to be at increased risk of anxiety, depression, social difficulties, lower educational attainment and underemployment. Despite these findings, the manifestation of neurocognitive deficits in adults and the relationship between childhood deficits and adult long-term outcomes has not been well-researched. We believe there is an unmet need for monitoring neurocognitive impairments in adulthood.”
The study anticipates 500 patients age 18-30 in 13 total test sites across the country with Children’s Wisconsin as one of the lead sites. Participating patients will undergo a series of cognitive tests to determine neurocognitive health. Biological specimens (blood or saliva samples) will also be collected for future studies that will explore any potential genetic influences on neurocognitive deficits.
Neurocognitive deficits are the latest area of focus for the adult congenital heart disease population, who for years have lived in health care limbo. Pediatric cardiologists, by definition, aren’t trained to care for the needs of an adult patient. At the same time, since congenital heart disease is different than heart disease that is acquired by age or lifestyle factors, most adult cardiologists aren’t trained to care for it. The result was a lack of physicians trained to treat adults with congenital heart disease. In fact, there wasn’t even an official certification for adult congenital heart disease specialists until early 2016.
In 2004, the Adult Congenital Heart Disease Program was created at Children’s Wisconsin, the first in Wisconsin and one of the first in the nation. From one doctor following a hundred patients in 2004, today the program has five doctors board-certified in Adult Congenital Heart Disease who care for more than 3,000 patients a year. With seven outreach sites located throughout Wisconsin, the program is 10 times bigger than the state’s second largest.
All of this growth culminated in 2016 when the program received accreditation by the Adult Congenital Heart Association as a Comprehensive Care Center, making it one of just 36 centers in the country to receive this designation. Children’s Wisconsin also offers one of only 16 ACHD fellowship training programs in the country. To date, we have trained eight ACHD specialists who are now all practicing at academic centers throughout the country.