Insights into the quality of life of adults with congenital heart disease: Study | Health

Adults with congenital heart disease (CHD) can now gain important insight into their long-term quality of life, according to data from the Congenital Heart Initiative (CHI). CHI is the nation’s first and largest patient-focused registry for people with coronary artery disease and recently launched its first study, including over 4,500 participants from all 50 states.

This study, published in JAMA Network Open, represents a major step forward in providing better information to the 1.5 million adults in the United States born with coronary artery disease.

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“Studies like this, using actual patient voices and experiences, help us get a better sense of how to counsel, support and treat people with coronary heart disease as they age,” says Anitha John, MD, Ph.D., director of the Washington Adult Congenital Heart Program at Children’s National Hospital and senior author of the study. “It also gives researchers a clearer picture of the questions that need to be answered to ensure they have the best possible quality of life.”

Treatment of congenital heart defects:

The treatment of children with congenital heart defects has improved so significantly over the last two decades that life expectancy continues to increase.

“There are now more adults living with congenital heart disease than children with coronary artery disease,” said Scott Leezer, lead patient researcher for the Congenital Heart Initiative registry and co-author of the study. “However, there remains a significant gap in what we know about the adult CHD population. As an adult CHD patient, I was excited to help create this registry and provide more answers to people like me who want to know how our unique heart affects our body and quality of life over time.

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The authors note that the results of the study and the registry data currently have some limitations. First, the registry contains only patient-reported outcomes and no clinical data. The first substudy of the CHI, the CHI-RON study, addresses this challenge by incorporating additional data sources for a subset of consenting CHI participants.

Additionally, recall biases, underlying neurocognitive challenges, and survey fatigue may limit participation in the CHI to a smaller subset of adults with CHD. Efforts are being made to develop methods to enable people with congenital heart disease, neurodevelopmental deficits or other disabilities to participate in registration. CHI is temporarily closed to new registrants as the study team redesigns the study to better fit the needs of the community.

“We are grateful to everyone who joined this registry, answered survey questions and shared their experiences,” said Thomas Carton, Ph.D., chief data officer at the Louisiana Public Health Institute and co-author of the study. “The CHI Registry is a major step forward for adults with coronary heart disease, but can also serve as a model for how physicians, researchers and patients can come together as active participants in care, research and advocacy.”

As the registry grows in the future, it will focus on increasing the diversity of participants, developing additional partnerships with other organizations, further innovating in data use, and improving community engagement – all with the goal of guiding future research , which will ultimately improve the quality of life of all adults with CHD.

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Disclaimer: This article is for informational purposes only and is not a substitute for professional medical advice. If you have any questions about a medical condition, always seek advice from your doctor.

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