In The United States There Are More Adults Than Children with Congenital Heart Disease, But They Often Do Not Receive the Specialized Care they Need

Thanks to advances in Medicine, more than 95% of children with congenital heart disease survive to adulthood in developed countries, including the United States. Despite this, it is estimated that 60 to 90% of them do not receive care by an adult congenital heart disease (ACHD) specialist. Achieving health equity in populations with congenital heart disease (CHD) requires recognizing existing disparities throughout the lifespan that negatively and disproportionately impact specific groups of individuals.

Studies have shown that Hispanic people with congenital heart disease are more likely to be affected by adverse social determinants of health, live far from congenital heart centers and therefore are more likely to get lost to follow-up when they become adults. They are at risk of urgent admissions and complications as a consequence of not having lifelong care. Many of them believe they are cured after surgery and others believe that as long as they do not have symptoms, they are healthy.

We know that adults with congenital heart disease with serious complications have learned to adapt to their condition and symptoms do not correlate with objective assessments. Furthermore, Hispanic participation in congenital heart disease research and advocacy groups is limited.

Experts in the Mayo Clinic Florida ACHD Program are here to collaborate with the community. The program takes a multidisciplinary approach including board-certified ACHD physicians who work alongside interventionalists, surgeons, heart rhythm specialists, advanced practice providers, nurses and an administrative team to provide cutting-edge care along with a full complement of specialized diagnostic testing and surgical and interventional procedures to over 300 patients with ACHD each year.

This year, the Mayo Clinic Florida ACHD Program launched the Hispanic ACHD initiative. This initiative aims to provide language concordant ACHD care and bridge the care gap affecting Hispanic patients with congenital heart disease. Social media is also being leveraged to provide education relevant for early detection and lifelong care for people with congenital heart disease in a story telling format, based on evidence. Follow Soncco (heart in Quechua, the native Inca empire language) in social media platforms to learn more about this educational initiative.

Lopez KN, Allen KY, Baker-Smith CM, Bravo-Jaimes K, Burns J, Cherestal B, Deen JF, Hills BK, Huang JH, Lizano Santamaria RW, Lodeiro CA, Melo V, Moreno JS, Nuñez Gallegos F, Onugha H, Pastor TA, Wallace MC, Ansah DA. Health Equity and Policy Considerations for Pediatric and Adult Congenital Heart Disease Care among Minoritized Populations in the United States. J Cardiovasc Dev Dis. 2024 Jan 25;11(2):36. doi: 10.3390/jcdd11020036. PMID: 38392250; PMCID: PMC10888593.

Cabrera Fernandez DL, Lopez KN, Bravo-Jaimes K, Mackie AS. The Impact of Social Determinants of Health on Transition From Pediatric to Adult Cardiology Care. Can J Cardiol. 2024 Jun;40(6):1043-1055. doi: 10.1016/j.cjca.2024.03.023. Epub 2024 Apr 5. PMID: 38583706.

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