New research shines a critical light on the quality of life for adults with congenital heart disease (CHD). The work comes from the Congenital Heart Initiative largest patient-centered registry in the country focused on patients with CHD. The report, which reflects the voices of over 4,500 participants from all 50 states, was recently published in JAMA Network Open.
This study represents an important milestone in the life course of the 1.5 million adults who live in the United States and are born with CHD. Many due to advances in treatment over the last two decades, these individuals can live longer. Today there are more adults living with CHD than children with the condition. However, significant knowledge gaps persist in how CHD affects adults over a lifetime.
“This is truly a study that gives a voice and represents the experiences of the patients themselves,” says Anitha John, M.D., Ph.D., senior author of the study and director of the Washington Adult Congenital Heart program. “It is studies like these that help us in learning how to better support, advise, and treat people with CHD as they grow older,” she says. Responses gathered from the patients themselves will give researchers an idea of what kind of problems a patient with CHD is facing. And remedial measures can be taken to ensure an enhanced quality of life.
Scott Leezer is a co-author of the study and also the patient co-principal investigator for the CHI registry. He says his own experience as an adult with CHD motivated him to help build this registry. “There is still a lot we don’t know about how CHD affects adults. And this research helps answer important questions about our health and quality of life,” he says.
There are several limitations in this study. First, the registry contains only patient-reported outcomes without a clinical component. To address this, researchers will obtain additional data from a subset of enrollees in the sub-study CHI-RON. Additionally, survey fatigue and recall bias may have caused low participation. Plans are underway to involve adults with neurodevelopmental disabilities or other challenges in this effort.
Researchers have temporarily closed the CHI registry as they rebuild it to better serve the community. “This registry shows what’s possible when physicians, researchers. And patients come together in care, research, and advocacy,” says Thomas Carton, Ph.D., a coauthor and chief data officer at Louisiana Public Health Institute.
Looking into the future, the CHI contemplates further diversification of participants and more partnerships. And enhanced engagement for a better quality of life among adults with CHD.
ANI
