This post is written by Kathy Jenkins, MD, FACC, Chair of the Adult Congenital and Pediatric Cardiology Council
Congenital Heart Defects Awareness Week is Feb. 7-14. According to the Center for Disease Control and Prevention (CDC), “congenital heart defects affect nearly 1 percent of infants born in the U.S.” As medical care and treatments have advanced, infants with congenital heart defects are living longer and healthier lives and over the past 10 years we have seen a 25 percent reduction of congenital heart disease (CHD) morbidity and mortality. It is estimated that approximately two million people of all ages are living with congenital heart defects in the U.S.
There is still a lot that can be done to help those who are living with congenital heart defects and the physicians who treat them. Since its inception in 2005, the College’s Adult Congenital and Pediatric Cardiology (ACPC) Section has been working to bring quality care to children and adults with CHD through education, quality and advocacy efforts.
The ACPC section has identified several tools for CHD patients as they transition between a pediatric cardiologist and an adult congenital cardiologist, including the Adult Congenital Heart Association’s Personal Health Passport and other tools like Follow My Heart, an electronic based personal health record (PHR). These types of tools are important as CHD patients transition into an adult congenital clinical setting. A CHD patient’s ability to access electrocardiograms and echocardiogram, heart catheterization, and operative reports and other important medical information will help his or her various healthcare providers understand the patient’s unique health care needs.
On the quality side, the College’s continued efforts with NCDR’s IMPACT Registry™ (IMproving Pediatric and Adult Congenital Treatment) is an enormous step in measuring outcomes and care for CHD patients undergoing a diagnostic or treatment cath. Additionally, the ACPC Section has other quality effort underway to develop quality metrics in CHD which may ultimately be used in local or national Quality Improvement initiatives.
On March 1, the ACPC Section will join the Adult Congenital Heart Association and Mended Little Hearts for National Congenital Heart Lobby Day. Together we will lobby Congress for continued funding for the Congenital Heart Futures Act, (included in the ACA and passed into law in 2012). The law established a population-based surveillance registry (through the CDC's existing National Center on Birth Defects and Disabilities). This registry will allow for increased research to better understand congenital heart disease incidence, prevalence and disease burden, as well as a CHD public health impact assessment. Congenital Heart advocates will also promote the recently established Congenital Heart Caucus chaired by Representative Bilirakis.
A welcome reception for National Congenital Heart Lobby Day will be held February 29 at Heart House. The reception is generously sponsored by the Texas Chapter of the ACC. Thank you also to ACC’s Iowa, Georgia, and Louisiana Chapters who have provided funding to benefit this advocacy effort for ACC members, as well as congenital heart disease patients and family members.
To join us or for more information about the National Congenital Heart Lobby Day click here. For more information about the College’s ACPC Section visit www.cardiosource.org/ACPC.