The CFA Perspective

Adult Congenital Heart Disease Affects 1.4 Million in U.S.

Posted by John Meyer, FACHE

7/18/16 11:05 AM

Adult_Congenital_Heart_Disease_Affects_1.4_Million_in_U.S.-851819-edited.jpgIt’s easy to take the congenital heart defect population for granted.  It constitutes only a relatively small portion of those impacted by cardiovascular disease and has historically consisted predominantly of children born with inherited defects.  Thus, this is a population traditionally treated by children’s hospitals, academic medical centers and very large regional hospital cardiovascular programs.

However, a recent study by the Centers for Disease Control (CDC) in Atlanta should reopen the topic.  According to the study, published July 12 in Circulation, an estimated 2.4 million people in the U.S. were living with congenital heart defects in 2010, a 40 percent increase from 2000.  Of those 2.4 million, 1 million were children, but 1.4 million were adults.  From 2000 to 2010, the proportion of adults with congenital heart defects rose 63 percent, likely due to several factors:

  • medical and surgical advances in the last 30 years have decreased death rates
  • a growing number of babies are surviving to reach their adult years
  • most patients will need lifelong cardiac care (and many don’t receive the appropriate care as they transition to adulthood)

This study is the first contemporary assessment of the number of people living with congenital heart defects in the United States based on factors such as age, sex and ethnicity.  The research was the result of a study performed in Quebec, Canada and its findings applied to the U.S. population as a whole.  While there are some technical limitations to the study, its conclusions should be considered no less consequential.  As the CDC’s news release stated:   “there is a substantial population of adults in the United States that have survived infancy and childhood and are living with congenital heart defects.  They need the appropriate care in order to have full and productive lives.”

The study confirms that congenital heart disease is a public health issue with more adults affected than children, and that’s important from a health care delivery and a policy standpoint, said senior study author Ariane Marelli, M.D. MPH and professor of medicine at McGill University in Montreal.  “People used to think of congenital heart disease as a pediatric condition. There’s really no question now that congenital heart disease falls squarely in the realm of adult medicine,” she said.We need to have more congenital heart disease programs and more manpower to meet the needs of this population.”

Adult Congenital Heart Disease Opportunity

Progressive hospitals have recognized that the adult congenital heart disease (ACHD) market is underserved and is an evolving opportunity for their CV programs – as confirmed by the new study.  It has been estimated that fewer than ten percent of ACHD patients who need care from specialized ACHD centers are receiving the recommended care.  Individuals with ACHD often need additional operation(s) and/or medications as adults.  This is true even if they had a successful repair as a child.  Examples of ACHD needs include:

  • Being at risk for developing an arrhythmia
  • Requiring a further surgery as an adult after pediatric surgery
  • Have had a graft implanted as a child that is now too small for an adult body
  • Have had a valve replaced as a child that has worn out over time
  • Be pregnant, or wish to become pregnant, and require regular monitoring
  • Virtually any surgical procedure presents an additional risk to ACHD patients

Compared to the regular population, adult congenital heart disease patients have 3-4 times higher rates of emergency department visits, hospitalizations and intensive care stays.  These factors make planning that addresses episodes of care more problematic.  These patients face a far greater risk of early death and disability.  This is critical information from a Population Health Management standpoint.

Developing an ACHD Program

The Adult Congenital Heart Association publishes a directory of accredited ACHD Clinics (see  For example, there are eight hospitals in Southern California that provide ACHD services, all but one being academic medical centers.

In business planning terms, if one were interested in developing an ACHD program, initial investigation should focus on:

  • size of the market within the designated market area
  • ability to marshal the necessary resources to successfully address the clinical needs of this targeted population
  • qualified physician champion availability and interest

Training for structural and adult congenital heart disease interventions remains underdeveloped.  ACHD can be very complex and there are simply not enough physicians who have been trained in this subspecialty area.  In addition, physicians treating ACHD tend to be affiliated with hospitals with pediatric programs, where the majority of ACHD clinics co-exist, making it all the more challenging for large community or regional hospital CV programs to recruit the necessary staffing, provide the specialized support services and acquire reasonable volumes.  Typically, ACHD care uses a team-based approach, with pediatric cardiology, adult cardiology and cardiothoracic surgery on the team.  Patient volume and specific clinical expertise are factors, as research has shown that outcomes are optimized under these conditions.

The market for ACHD services is small, but growing and becoming more important, as more children survive with congenital defects into adulthood.  While providing services to this population is challenging, it may be just the specialty niche hospitals are looking for to build clinical expertise, enhance financial performance and build brand awareness.  It deserves the attention of every large and/or regional hospital cardiovascular program.

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If you are interested in learning more about developing programs for adults with congenital heart disease, please contact CFA at (949) 443-4005 or by email at