Study: Adult Congenital Heart Disease Population Surges in US

Pam Harrison

July 07, 2016

ATLANTA, GA — Some 2.4 million people, more than half of them adults, were living with congenital heart disease (CHD) in the US in 2010, and that number can be expected to rise, new research shows[1].

"If the current estimate of 1.4 million adults with CHD in 2010 is considered, it represents a 63% increase in the estimated size of the adult population with CHD in the US since the year 2000," lead author Dr Suzanne Gilboa (Centers for Disease Control and Prevention, Atlanta, GA) and colleagues write.

Overall, the prevalence of CHD in 2010 represents a 40% increase in the overall population living with CHD in the US since the year 2000.

Advances in medical and surgical treatment have led to decreased mortality attributable to CHD across all age groups in the US.

Still, nearly 300,000 of all individuals living with CHD in the US in 2010 had severe heart abnormalities, according to the study, published online July 5, 2016 in Circulation.

"People used to think of congenital heart disease as a pediatric condition," Gilboa noted in a statement from the American Heart Association.

"But there really is no question now that congenital heart disease falls squarely in the realm of adult medicine, and we need to have more congenital heart disease programs and more [resources] to meet the needs of this population."

Quebec Data

The investigators used data from Quebec to estimate the prevalence of CHD across the US in 2010, assuming that the prevalence of CHD in Quebec would be similar to that among non-Hispanic whites in the US.

The study authors reason, given the relative size of the US population, "the vast majority of individuals estimated to be living with CHD in the US are non-Hispanic white (approximately 1.7 million) compared with non-Hispanic black or Hispanic (approximately 700,000)." Slightly more females than males were living with CHD in 2010, they add.

However, the "most striking difference" between the gender-based prevalence of CHD was seen in the US population between the ages of 25 and 44. In this age group, six per 1000 women had CHD compared with only 3.8 per 1,000 for men.

This meant that some 247,000 women between the ages of 25 to 44 in the US were living with CHD in 2010 compared with approximately 157,000 men.

As Gilboa points out, the prevalence of CHD at birth is approximately eight to 10 per 1000 live births. The birth prevalence of CHD actually has increased over the past 3 to 4 decades, she adds, largely because detection of less severe forms of CHD, including ventricular and atrial septal defects, has improved.

"Survival, however, has also increased because of advances in medical and surgical care," Dr Gilboa notes. For example, between 1979 and 1993, the annual infant mortality rate due to CHD dropped by 40%.

Important Implications

Longer life expectancy for infants, adolescents, and adults living with CHD has important implications for their care. Heart abnormalities are associated with lifelong comorbidities and the need for expensive health care services, including surgery, as the investigators point out.

Editorialists Drs Richard Krasuski and Thomas Bashore (Duke University Medical Center, Durham, NC) couldn't agree more with the study authors' call for more programs and more resources to meet the needs of individuals with CHD][2].

They also point out, however, that the US is poorly equipped to offer the kind of services that adolescents and adults with CHD require as they age.

"Those of us taking care of CHD expected this growth in the adult CHD population," they write. "[Yet] despite these anticipated findings, we continue to underestimate the magnitude of the problem as well as the amount of resources necessary to appropriately manage it."

The best approach to reduce the administration of often-futile care that individuals with CHD often receive is to "identify, treat, and hopefully prevent many of the treatable complications in the outpatient setting before the wheels fall off," Drs Krasuski and Bashore suggest.

There is also an urgent and growing need to train more physicians who are knowledgeable about adult CHD and who can assess and manage patients with complex heart defects.

The first ACC/AHA joint guidelines on diagnosis and management of adult CHD were published in 2008, with a revision anticipated this fall.

Subspecialty status in cardiology was granted by the American Board of Medical Specialties in 2012, with the first class of approved fellowship training beginning July 2016.

Unfortunately, as the editorialists note, care for adult CHD patients is not well reimbursed, and so physicians are not incentivized to gravitate to the field.

"As a result, it will take likely many decades to appropriately expand our adult CHD specialist population," they state.

"Until that time, there is a greater need than ever to disseminate information about adult CHD and to instruct general cardiologists and primary practitioners in the community how to identify these conditions and recognize when and where to appropriately refer."

Gilboa reports no relevant financial relationships; disclosures for the coauthors are listed in the article. Krasuski reports having served as a consultant for Actelion and Bayer Pharmaceuticals and as an unfunded member of the scientific advisory board for Ventripoint. Bashore reports no relevant financial relationships.

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