A new study from Congenital Heart Initiative (CHI) provides information about quality of life for adults living with congenital heart disease (CHD). CHI is the largest patient-centered registry for CHD in the US. The study recently published its first research findings, which included more than 4,500 participants from all 50 states. The study, released in JAMA Network Open, represents an important step toward understanding the long-term effects CHD in adults,

congenital Heart The disease, which refers to structural heart defects present at birth, affects an estimated 1.5 million adults in the United States. As medical advances have improved treatments over the past few decades, more children with CHD are now reaching adulthood, increasing the population of adults living with the condition.

“Studies like this that take advantage of real patient voices and experiences can better inform us about advice, support, and treatment,” said Dr. Anita John, director of the Washington Adult Congenital Heart Program at Children’s National Hospital and senior author of the study. Help gain understanding.” “People with CHD age 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 revealed several findings that may help improve patient care and outcomes. One of the major revelations is that the number of adults suffering from CHD is increasing compared to children with the condition.

“As an adult CHD patient, I was excited to contribute to creating this registry,” said Scott Leaser, the CHI Registry’s patient co-principal investigator and study co-author. He added, “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 what our unique hearts do to our bodies and quality of life over time.” How to influence.”

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

Additionally, issues such as recall bias, neurocognitive challenges, and survey fatigue may have affected participation in the registry. The research team is working to develop methods that will allow people with neurodevelopmental deficits or other disabilities to be fully included in the registry. While 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, PhD, chief data officer at the Louisiana Public Health Institute and study co-author, expressed his gratitude to all participants who contributed to the research. Carton said, “The CHI Registry is a huge step forward for adults with CHD, but it can also serve as a model for bringing physicians, researchers, and patients together as active participants in care, research, and advocacy.” Is.”

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

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

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