Oregon Health & Science University
  • Kevin G. Billingsley, M.D. Craig Broberg, M.D.
    Director, Adult Congenital Heart Disease Program,
    OHSU Knight Cardiovascular Institute
    Dr. Broberg specializes in congenital heart disease and non-invasive imaging, particularly cardiac MRI. In 2003 he completed his cardiology fellowship training at and joined the Division of Cardiology in 2005 after an additional two-year fellowship abroad. He is an associate professor of cardiology.

    Kevin G. Billingsley, M.D. Patty Woods, C.N.P.
    OHSU Knight Cardiovascular Institute
    Patty is a nurse practitioner specializing in congenital heart disease in adolescents, adults and expectant mothers. She has a special interest in transitional care from childhood to adulthood.

Managing adults with congenital heart disease

From the OHSU Knight Cardiovascular Institute

Patients treated for congenital heart disease (CHD) are often lost to follow-up in young adulthood. This includes approximately 50 percent of those treated at academic medical centers. When adults with CHD do not receive needed care and monitoring, they may arrive in your office with nonspecific concerns such as fatigue and shortness of breath. Or they may visit the emergency department with more severe problems and come to you for follow-up.

Adult congenital heart disease — a costly condition

Research shows that appropriate adult congenital heart disease (ACHD) care is independently associated with reduced mortality rates. On the other hand, lack of monitoring and follow-up results in staggering health care costs.

The majority of health care spending on congenital abnormalities goes to adults with CHD, who make up less than 2 percent of the population.

More patients, living longer

Median age of patients with complex-severe congenital heart disease in...


Age 11


Age 17
2010 Age 25

Though just one percent of infants in the United States are born with heart defects, treatment and technological advances have increased survival. The percentage of adults living with CH lesions has increased by 85 percent in recent years.

Today the average patient with CHD is 25, compared to age 11 in the mid-1980s. Adults with CHD lead complex and demanding lives, including travel, pregnancy and residence in rural areas where specialty care is not readily available.

The World Health Organization’s Agency for Health Care Research and Quality showed that in 2004, birth defects caused more than 140,000 hospitalizations. More than 46,000 (33 percent) were for cardiac and circulatory abnormalities. The cost of all birth defects was $2.6 billion, but $1.4 billion — 54 percent — was for cardiac problems.

What do patients with ACHD need?

The OHSU Knight Cardiovascular Institute team frequently consults on the needs of patients with complex CHD. Depending on the issues, patients with moderate to severe CHD should see a specialist team approximately once a year. Patients with the following conditions may need care more often:

  • Pregnancy-Every trimester or as often as needed
  • Pulmonary hypertension
  • Needing further procedures, such as heart catheterization, or other medical management

Testing and Treatment

The minimum recommended tests are an annual echocardiogram and electrocardiogram. Specialized magnetic resonance (MR) imaging can be done as needed.

Adults with mild CHD may be followed in primary care unless problems arise. Adults with moderate to severe CHD should be seen regularly in an ACHD clinic. Patients who need surgery or cardiac catheterization are best treated by a team that specializes in CHD.

We recommend the American College of Cardiology and American Heart Association’s most recent guidelines for managing adults with congenital heart disease. Our team is always available to consult on these guidelines.

Successful transition from pediatric care

At the OHSU Knight Cardiovascular Institute, we are dedicated to helping young adults make a successful transition from pediatric care. Steps include:

The initial scheduling call. In addition to scheduling the visit and verifying details such as insurance, we discuss where the patient was treated and when, obtaining the original records whenever possible.

The first visit. At least one hour. We talk with the patient to determine his or her understanding of the heart defect, history and management, an often-overlooked aspect of CHD care. We also discuss short- and long-term risk, the importance of surveillance and lifestyle issues such as exercise tolerance and family planning.

The “I ♥ Change” program. At the OHSU Knight Cardiovascular Institute, we know just a fraction of ACHD patients receive specialized cardiac care, and we work closely with you to ensure your patients live full, rewarding lives. We use www.iheartchange.org to help alleviate patients’ and families’ anxiety about ACHD and make a successful transition to adult care.

Continuing medical education from international experts

We will host the 26th Annual International Symposium on Congenital Heart Disease in the Adult on June 1-6, 2016, at Skamania Lodge in the Columbia Gorge. This meeting provides outstanding continuing medication education for physicians and allied health providers and includes a half-day of patient and family education by leading CHD experts.

Contact us

Please visit the OHSU Adult Congenital Heart Disease Program online for more information. To refer a patient or consult with our team, call the OHSU Physician Consult & Referral Service at 800 245-6478.

Many patients with congenital heart disease report being told they would need follow-up care, but never knew why or the consequences of not receiving it. They often say, “I knew I had a heart defect, but I thought it was fixed.”


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