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A new study from the Congenital Heart Initiative (CHI) gives insights into the quality of life for adults living with congenital heart disease (CHD). CHI is the largest patient-focused registry for CHD in the U.S. The study has recently published its first research findings, involving over 4,500 participants from all 50 states. The study, released in JAMA Network Open, represents a significant step toward understanding the long-term effects of CHD in adults.

Congenital heart disease, which refers to structural heart defects present at birth, affects an estimated 1.5 million adults in the United States. As medical advancements have improved treatments over the past few decades, more children with CHD are now reaching adulthood, creating a growing population of adults living with this condition.

Dr Anitha John, director of the Washington Adult Congenital Heart program at Children's National Hospital and senior author of the study said, "Studies like this that leverage actual patient voices and experiences help us get a better sense of how to advise, support, and treat people with CHD as they age." "Researchers get a clearer picture of the questions that need to be answered to ensure they have the best quality of life possible."

The CHI study reveals several findings that can aid in improving patient care and outcomes. One of the major revelations is the growing number of adults living with CHD compared to children with the condition.

Scott Leezer, patient co-principal investigator for the CHI registry and co-author of the study said, "As an adult CHD patient, I was excited to contribute to creating this registry." "There is a significant gap in what we know about the adult CHD population. This registry will bring more answers to people like me who want to know how our unique hearts impact our bodies and quality of life over time," he further added.

The study also has some limitations. The registry majorly relies on patient-reported outcomes, with no clinical data included at this stage. To address this, the CHI-RON sub-study has begun incorporating additional data sources for a subset of consenting participants, providing a more comprehensive view of patient health.

Further, issues such as recall bias, neurocognitive challenges, and survey fatigue may have impacted participation in the registry. The research team is working to develop methods that will allow people with neurodevelopmental deficits or other disabilities to engage more fully in the registry. While the CHI is temporarily closed to new participants, efforts are underway to redesign the study to better meet the needs of the CHD community.

Thomas Carton, Ph.D., chief data officer at Louisiana Public Health Institute and co-author of the study, expressed gratitude to all participants who contributed to the research. "The CHI registry is a big step forward for adults with CHD, but it can also serve as a model for how to bring together physicians, researchers, and patients as active participants in care, research, and advocacy," said Carton.

Looking ahead, the CHI aims to expand its registry by increasing diversity among participants, fostering partnerships with other organizations, and continuing to innovate in data collection and usage.

As more data becomes available, the CHI hopes to develop new treatment strategies and support systems for adults with CHD, ensuring that this growing population receives the care and attention they need to lead fulfilling lives.

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