Clinician-to-Clinician Update Clinician-to-Clinician Update

Care for Adults with Congenital Heart Disease or Inherited Cardiovascular Conditions

August 2015

Congenital heart disease (CHD) and inherited cardiovascular conditions (ICC) have long been the treatment domain of pediatric providers. However, the number of adults with CHD or ICC has greatly expanded over the past few decades, thanks to astounding successes in pediatric cardiac care.1

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Adults with CHD or ICC have needs that are distinct from those of children, and lifelong care is required for optimal outcomes. 2 One of the greatest risks is misinformation. Many CHD patients mistakenly believe that childhood treatment was curative2, while some CHD and ICC patients may not know their exact diagnosis.2, 3 Indeed, some ICC patients only become aware of an inherited condition in adulthood.3 These populations may experience specific needs, including treatment for renal disease4, pregnancy complications5, psychosocial challenges6, and comorbid, acquired cardiovascular disease.3 Recent research indicates that patients with CHD or ICC fare better in comprehensive clinics that can provide tailored treatment and lifestyle recommendations.2, 3, 7, 8 Even patients who seem to be cured are recommended to have one consultation at a specialized clinic to confirm their diagnosis and determine if any further care is needed.2

The University of Minnesota Adult Congenital and Cardiovascular Genetics Center is one of only about 100 such specialized centers in the nation. We provide the following services for adult CHD and ICC patients:

  • Cardiovascular examinations
  • Echocardiographic and radiologic imaging
  • Diagnostic and interventional catheterization
  • Medical treatment of heart failure
  • Medical treatment of pulmonary hypertension
  • Electrophysiology studies
  • Insertion of cardiac pacemakers and defibrillators
  • Congenital cardiac surgery
  • Placement of ventricular assist devices
  • Cardiac transplantation
  • Genetic counseling and testing
  • Management of contraception and high-risk pregnancies

Our team partners closely with referring providers to provide personalized cardiovascular care and support to adults with CHD or ICC and their families.

References

1. Mulder BJ. Epidemiology of adult congenital heart disease: demographic variations worldwide. Neth Heart J. 2012;20:505-508.

2. Warnes CA, Williams RG, Bashore TM, et al. ACC/AHA 2008 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.

3. Ingles J, Zodgekar PR, Yeates L, et al. Guidelines for genetic testing of inherited cardiac disorders. Heart Lung Circ. 2011;20:681-687.

4. Harrison JL, Silversides CK, Oechslin EN, et al. Healthcare needs of adults with congenital heart disease: study of the patient perspective. J Cardiovasc Nurs. 2011;26:497-503.

5. Lindley KJ, Conner SN, Cahill AG. Adult congenital heart disease in pregnancy. Obstet Gynecol Surv. 2015;70:397-407.

6. Kovacs AH, Sears SF, Saidi AS. Biopsychosocial experiences of adults with congenital heart disease: review of the literature. Am Heart J. 2005;150:193-201.

7. Priori SG, Wilde AA, Horie M, et al. HRS/EHRA/APHRS expert consensus statement on the diagnosis and management of patients with inherited primary arrhythmia syndromes: document endorsed by HRS, EHRA, and APHRS in May 2013 and by ACCF, AHA, PACES, and AEPC in June 2013. Heart Rhythm. 2013;10:1932-1963.

8. Hershberger RE, Lindenfeld J, Mestroni L, et al. Genetic evaluation of cardiomyopathy—a Heart Failure Society of America practice guideline. J Card Fail. 2009;15:83-97.

When to refer

We see patients with congenital heart disease, including atrial septal defect, coarctation of the aorta, congenital valvular disease, Ebstein anomaly, patent ductus arterioses, tetralogy of Fallot, transposition of the great arteries, ventricular septal defects, and single ventricle conditions such as hypoplastic left heart and double outlet right ventricle. We also see patients with inherited cardiovascular conditions, including inherited/familial cardiomyopathies, such as hypertrophic or familial dilated cardiomyopathy as well as arrhythmogenic right ventricular cardiomyopathy. We treat genetic conditions affecting the heart and/or major blood vessels, such as Marfan, Turner, Williams, and Ehlers Danlos syndromes. We provide care for metabolic and storage disorders that can have cardiac manifestations, such as Fabry disease, Pompe disease, and carnitine deficiency. We also welcome patients with a family history or clinical suspicion of an inherited heart condition without a known diagnosis.

Please refer directly to our Adult Congenital and Cardiovascular Genetics Center.

For patient referrals: 612-626-1374

For consultation with our clinic nurse, treatment recommendations, or other questions and concerns: 612-625-7152 or 612-626-8908

Collaborative Care

Our multidisciplinary team includes experienced adult and pediatric cardiologists, electrophysiologists, cardiac imaging specialists, cardiovascular geneticists, maternalfetal medicine specialists, dedicated nurse coordinators, and a genetic counselor, all of whom work seamlessly with other medical or surgical specialists as needed. We are happy to provide a consultative visit for your patient and then collaborate with you to outline and establish a follow-up plan, or we can transition the patient’s primary cardiology care to our clinics. We are committed to ongoing communication with you about your patient and will consult directly with you within 24 hours of your patient being seen. An adult congenital physician is available on call for phone consultations or for assisting in transferring a patient for further care. The on-call ACHD physician can be reached at 612-273-3000; callers should ask for the adult congenital physician on call or job code 0401.

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