Mortality associated with congenital heart defects/disease (CHD) in children has been declining over the last several decades thanks to advances in fetal diagnoses, neonatal intensive care, and reparative operations. About 75% of babies born with a critical CHD are expected to survive to 1 year, and 69% are expected to survive to 18 years of age.1 In the United States in 2010, more adults than children were living with CHD (1.4 million to 1 million).2 In 2008, it was predicted that by 2018, almost 1 in 150 young adults would have some form of CHD.3
Despite their expanding numbers, the care needs of adult CHD patients remain largely unmet.3 A high proportion of children who transition to adult cardiology care are lost to follow-up or don’t receive care for long periods.4
“One of the risks for these patients is that some of them don’t realize that CHD is never cured,” says Kimara March, MD, a University of Minnesota Health specialist in adult congenital and interventional cardiology. “Often, their diagnosis or what surgeries they had, these things weren’t made clear to them.” As a result, they may not know how to prevent an emergency or understand the implications of pregnancy.
Adults with CHD require ongoing care to maintain optimal health. The American College of Cardiology/American Heart Association (ACC/AHA) guidelines recommend that care for these patients include a pattern of visits, follow-up, surgical care, subspecialty cardiac and non-cardiac care, emergent medical access, data coordination and dissemination, referral guidance, and education.
Adult patients with CHD may also need specialist reproductive counseling and appropriate obstetric care, psychological and social counseling, and genetic testing. The long-term complications these patients face can include arrhythmia, thromboembolism, heart failure, pulmonary hypertension, and endocarditis.5 Most will need to undergo catheterization, a catheterization intervention, or surgery.6
Medical officials have called for organizing care for adults with CHD within a regional and national system of specialist adult CHD centers of excellence that provide care, education, research, and training. Currently, fewer than 20 centers in the United States provide physician
training in adult CHD.7
To provide services to this patient population, University of Minnesota Health Heart Care has established a
dedicated team specializing in adults with CHD and staffed with cardiologists carrying the new board certification in adult congenital cardiology. Specialists coordinate care with a range of providers, including neurologists, nephrologists, pulmonologists, and obstetricians specializing in high-risk pregnancies, among others. A formal care transition program helps in providing young patients with optimal management and education as they transfer out of pediatric cardiology and into adult CHD care.
In addition to the University’s ongoing research into CHD and clinical trials on the conditions that arise from it (see Program Updates), the University of Minnesota Medical School has implemented fellowship rotations to provide additional training in the fundamentals of adult CHD care for future pediatric and adult cardiologists.
1. Centers for Disease Control and Prevention. Congenital Heart Disease: Data and Statistics. https://www.cdc.gov/ncbddd/heartdefects/data.html. Accessed June 29, 2018.
2. Gilboa SM, Devine OJ, Kucik JE, et al. Congenital heart defects in the United States: estimating the magnitude of the affected population in 2010. Circulation. 2016;134:101-109.
3. Warnes CA, Williams RG, Bashore TM, et al. ACC/AHA Guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines. Circulation. 2008;118:e714-833.
4. Heery E, Sheehan AM, While AE, et al. Experiences and outcomes of transition from pediatric to adult health care services for young people with congenital heart disease: a systematic review. Congenit Heart Dis. 2015 Sep-Oct; 10(5):413-427.
5. Ntiloudi D, Giannakoulas G, Parcharidou D, et al. Adult congenital heart disease: a paradigm of epidemiological change. J Cardiol. 2016; Sep 1;218:269-274.
6. Moodie, DS. Adult Congenital Heart Disease. Ochsner J. 2002; 4(4): 221-226.
7. Moodie, D. Coselli, JS. Adult congenital heart disease: past, present, and future. Tex Heart Instit J. 2011; 38(6):705-706.
Adults with congenital heart disease (CHD) may experience arrhythmias, valvular heart disease, pulmonary hypertension, and heart failure. They may require interventional and surgical procedures, including heart transplantation. CHD can also affect the lungs, kidneys, and reproductive organs. Above all, to maintain optimal health, adult patients with CHD require a thorough education about the health implications of their condition.
University of Minnesota Health Heart Care cardiologists bring an experienced, specialized care team focus to the management of CHD in adults. Three of our cardiologists are board-certified in adult CHD. Heart care services include cardiac electrophysiology and surgical services from minimally invasive cardiac catheterization procedures to valve replacement or transplantation. We are proud to build on a more than 60-year legacy of innovation in cardiac surgery. Our team includes genetic counselors, care coordinators, cardiologists, cardiothoracic surgeons, and vascular medicine specialists as well as pediatric heart care specialists and palliative care providers. We provide multidisciplinary care coordination, patient education, and a formal transition program bridging young patients from pediatric cardiology to adult congenital cardiology care.
Our physicians work closely with community physicians and families in the transition to adult congenital cardiology and subspecialty care. Physicians are available 24/7 for telephone consultations regarding established patients. Nurses are available during clinic hours to answer patients’ questions at 612-676-5961.
A complete list of the CHD and congenital genetic conditions treated in the clinic is available at mhealth.org/adultCHD
To request a free copy of the University of Minnesota Health Adult Specialty Directory, visit mhealth.org/for-medical-professionals/adultspecialty-directory
To find current clinical trials available through M Health providers: studyfinder.umn.edu
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