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Consult

Clinician-to-Clinician Update
To schedule a consultation, referral or appointment:

Adult Congenital Heart Disease Care Locations:

University of Minnesota Health
Clinics and Surgery Center

909 Fulton St. SE
Minneapolis, MN 55455

Ridgeview Medical Building
303 E. Nicollet Blvd.
Burnsville, MN 55337

Fairview Southdale Hospital
6405 France Ave. S
Edina, MN 55435

Innovations in Congenital Heart Disease Care

Deaths from congenital heart disease (CHD) have declined over the past several decades due to advances in cardiology, cardiac surgery, neonatal intensive care, and pharmacotherapy. The chance of survival into adulthood increased from about 15% in the 1960s to more than 85% today.1 About 95% of babies born with a noncritical CHD and 69% born with a critical CHD are expected to survive to age 18.2 According to a recent study, about 1 million children and about 1.4 million adults in the United States are living with CHD.2 

Cardiologist arranges equipment in the catheterization lab
A cardiologist arranges equipment
in the catheterization lab. New transcatheter
heart valves have offered added treatment
options to patients with congenital heart disease.
Although repair of CHD can normalize cardiac structure and function, many patients experience health conditions as sequelae of CHD and will require specific follow-up and care.3 As they mature into adulthood, patients with CHD can require additional surgical procedures or heart valve replacements. Infants who have had surgical repair of right ventricular outflow tracts often require 4 or more procedures over their lifespan. 

Long-term complications associated with CHD include arrhythmia, thromboembolism, heart failure, pulmonary hypertension, and endocarditis.4,5 For those CHD patients who require interventions, minimally invasive surgical techniques, advanced imaging technology, and new valves and devices have improved outcomes. Collectively, the new approaches and technologies have reduced risks associated with placement of valves and ventricular assist devices and shortened recovery times. 

To maintain optimal health, adults with CHD require ongoing team-based care; however, many patients are lost to follow-up and may fail to receive treatment for conditions arising from CHD. The American College of Cardiology/American Heart Association guidelines recommend that these patients receive referral guidance and education as well as surgical, follow-up, subspecialty cardiac, and noncardiac care. Specialist, team-based care is best positioned to detect health conditions and cardiac problems associated with CHD.6 A formal transition program that assists patients in the move from pediatric to adult health services can help ensure continuity in care. 

New transcatheter heart valves offer additional treatment options to patients with CHD and help reduce hospitalization and recovery times. Along with recent approvals of transcatheter aortic and mitral valves, 2 valves are currently available for percutaneous pulmonary valve implantation: the SAPIEN valve (Edwards Lifesciences, Irvine, CA) and the Melody valve (Medtronic, Minneapolis, MN). Other SAPIEN valves are being tested in clinical trials in younger, lower-operative risk patients or as a replacement for failing bioprosthetic aortic valves. (See Program Updates.) Surgeon and interventionalist collaborations have helped further improve implementation of transcatheter procedures. (See Case Study for further discussion.) New clinical trials, including those conducted by University of Minnesota Health Heart Care specialists, are exploring the expanded use of transcatheter valves and management of health risks in patients with ventricular assist devices. 

References 

  1. Budts W, Roos-Hessenlink J, Rädle-Hurst T, et al. Treatment of heart failure in adult congenital heart disease: a position paper of the working group of grown-up congenital heart disease and the Heart Failure Association of the European Society of Cardiology. Eur Heart J. 2016;37(18):1419-1427. doi.org/10.1093/eurheartj/ehv741 
  2. Centers for Disease Control and Prevention. Congenital heart defects: Data and statistics on congenital heart defects https://www.cdc.gov/ncbddd/heartdefects/data.html Accessed March 25, 2019. 
  3. 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(2):101-109. doi.org/10.1161/CIRCULATIONAHA.115.019307 
  4. Perloff JK, Warnes CA. Challenges posed by adults with repaired congenital heart disease. Circulation. 2001;103(21):2637-2643. 
  5. Ntiloudi D, Giannakoulas G, Pacharidou D, et al. Adult congenital heart disease: a paradigm of epidemiological change. Int J Cardiol. 2016 Sep 1;218:269-274. 
  6. Stout KK, Daniels CJ, Aboulhosn JA, et al. 2018 AHA/ACC guideline for the management of adults with congenital heart disease: executive summary. J Am Coll Cardiol. 2019 April;73(12):1494-1563. doi: 10.1016/j.jacc.2018.08.1028

When to refer

Adults whose congenital heart disease (CHD) was treated or remained undiagnosed in childhood may experience arrhythmias, valvular heart disease, pulmonary hypertension, heart failure, and other conditions. Adults with CHD may require later interventions and procedures, including heart transplantation. CHD can also affect the lungs, kidneys, and reproductive organs. To manage conditions associated with CHD and maintain optimal health, adult patients need thorough education about the potential health implications of their condition. 

The adult CHD care team with University of Minnesota Health provides experienced, tailored care. Three of our cardiologist team members are board certified in adult CHD, and we are among the most highly specialized teams in the Minneapolis-St. Paul metro area. We offer cardiac electrophysiology-related services and a range of interventions from minimally invasive cardiac catheterization procedures to valve replacement or transplantation. We are proud of our 60-year legacy of innovation in cardiac surgery, and through our participation in clinical trials, we continue to investigate and make available new surgical approaches. 

Our care team includes genetic counselors, care coordinators, cardiologists, cardiothoracic surgeons, and vascular medicine specialists, in addition to pediatric heart care specialists and palliative care providers. Through our multidisciplinary care coordination, patient education, and formal transition program, we help ensure uninterrupted care, bridging patients from pediatric to adult cardiology providers. 

Our physicians work closely with community physicians and families in transitioning patients to adult congenital cardiology and subspecialty care. Physicians are available around-the-clock daily for telephone consultations, and nurses can respond to questions during clinic hours.

For appointments, provider referrals, or more information, call 612-676-5961. To review the CHDs and related genetic conditions we treat, visit mhealth.org/adultCHD

To find current clinical trials available through University of Minnesota Health providers, visit studyfinder.umn.edu.

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