Published October 16, 2024
A recent publication in JAMA Network Open helps to shed light on the quality of life and health outcomes among adults with congenital heart disease (CHD) through critical findings from the Congenital Heart Initiative (CHI) registry. Ochsner Health pediatric cardiologist and adult congenital heart specialist, Thomas Young, MD, is a contributing author for the publication.
In the United States, over 1.5 million adults live with CHD, showcasing the critical need for comprehensive research and enhanced clinical care. The CHI responds to this need as a digital, online registry that empowers patients by collecting patient-reported outcomes (PROs). This initiative aims to advance multicenter research, offering invaluable insights to improve both the understanding and management of CHD in adults.
Drawing from over 4500 participants, this longitudinal cohort study stands as the largest registry of adults living with CHD in the US, encompassing a wide spectrum of CHD subtypes. The key insights garnered from this exhaustive study indicate that health-related quality of life was rated as good or better by an overwhelming 84% of the participants, irrespective of the complexity of their CHD. However, the study observed that those with complex CHD were less likely to meet standard physical activity guidelines. Another significant finding highlighted the prevalence of reported mood disorders among patients, yet a majority still reported good health-related quality of life.
“Over several decades, we’ve seen significant advancements in diagnostics and surgical procedures that have led to many more patients with CHD surviving into adulthood,” said Dr. Young. “However, we have not kept pace with long-term outcomes research with this patient population due to many factors, including the lack of a reliable registry mechanism. The CHI is now providing us with a better understanding of clinical outcomes for adults with CHD, which will help to improve quality of life and health outcomes for more CHD patients in the future.”
This research underscores the importance of patient-reported outcomes in understanding and improving the health and quality of life for adults with CHD. The insights from this study pave the way for future research and targeted interventions to further improve the health-related quality of life for this patient population.
