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Prevalence of US adults with congenital heart defects increased greatly
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The number of Americans living with congenital heart disease, particularly adults, grew substantially from 2000 to 2010, according to new data published in Circulation.
In 2010, there were 2.4 million people living with congenital heart disease in the United States, up 40% from 2000, and there were 1.4 million U.S. adults with congenital heart disease, up 63% from 2000, according to the researchers.
“There is a substantial population of adults in the United States who have survived infancy and childhood and are living with congenital heart defects,” Suzanne Gilboa, PhD, MHS, an epidemiologist with the CDC, said in a press release. “They need the appropriate care in order to have full and productive lives.”
Suzanne Gilboa
Of those living with congenital heart disease in 2010, approximately 290,000 (12%) had severe heart defects, Gilboa and colleagues reported.
Gilboa and colleagues based their estimates off 2010 congenital heart disease prevalence data from Québec, Canada, and made adjustments to derive estimates for blacks and Hispanics.
According to the results, the prevalence of congenital heart disease ranged from approximately six per 1,000 in adults to 13 per 1,000 in children, although the majority of those with congenital heart disease are adults.
Approximately 1.7 million of those with congenital heart disease are white, whereas approximately 700,000 are black or Hispanic, although the rate of congenital heart disease is higher in blacks and Hispanics than in whites, the researchers wrote.
The prevalence of congenital heart disease was slightly higher in women vs. men, driven by a difference in those aged 25 to 44 years (women, six per 1,000; men, 3.8 per 1,000), according to the researchers.
Ariane Marelli
“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,” Ariane Marelli, MD, MPH, professor for medicine at McGill University in Montreal, said in the release. “We need to have more congenital heart disease programs and more manpower to meet the needs of this population.” – by Tracey Romero
Disclosure: The researchers report no relevant financial disclosures.
Perspective
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Michael Landzberg, MD
I see the epidemiologic data as supporting the need for more education, greater readiness on the part of the general internist and the general cardiologist as well as the subspecialty cardiologist. The partnership across the board for adult medicine is key.
It stands out to both the general internist and the general cardiologist that there really is a population in need, and that there is a growing population they need to be increasingly aware of to know the morbidities and the consequences of congenital heart disease.
We have come to recognize as a field that the ability to provide expert care to this population largely depends upon our ability to partner with our colleagues in internal medicine and in adult-acquired heart disease by extending our education and by extending their level of comfort and their understanding of the rules of engagement of congenital heart disease, to make them more comfortable in their experience with adults with congenital heart disease, and to make sure they feel comfortable with and in partnership with experts for advanced heart-related issues in the management of adults with congenital heart disease. So for example, the vast majority of adults with congenital heart disease can get cared for extremely well in such a partnership such that the majority of their visits would be with their internist or primary cardiologist and the episodic visit might be with a specialist in a specialty care center. Likewise, those patients with moderate or severe congenital anatomy, some sort of physiologic problem, may require major care in a more comprehensive adult congenital heart disease center.
This country is in the process of accrediting comprehensive care centers for the management or advancement of care for adults with congenital heart disease. It is a process that has been 10 years in the making and about 1 1/2 years in the process of being run through the Adult Congenital Heart Association. Among the 150 or so self-proclaimed adult congenital heart disease centers, the ACHA is trying to standardize the ability to assess the quality of care and the extension of that care. So general internists and general cardiologists can have 24-7 access to more comprehensive centers. That is one aspect of education.
In addition, the American College of Cardiology has a program through its state chapters called PATCH (Provider Action Through Treating Congenital Hearts program), a partnership between state chapters of the ACC and the ACHA. Through the program of education, congenital heart disease experts will go to chapter meetings and develop a 1- to 2-year program with each state including educational series, greater advocacy and awareness of the experts of congenital heart disease in that state. In addition, there will be tangibles so that people can look at quality improvement in terms of education and access for adults with congenital heart disease.
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