California Heart Connection
A support and information network for those with congenital heart defects

People With Congenital Heart Disease Living Longer
Despite rising diagnoses, better care means patients enjoying better quality of life, study finds
By Steven Reinberg, HealthDay Reporter
(view abstract of original study)

TUESDAY, Jan. 9 (HealthDay News) -- The incidence of congenital heart defects went up by 85 percent in adults and by 22 percent in children from 1985 to 2000, according to a Canadian study, but the news is not all bad.

Better diagnosis and treatment has increased the number of adults living with congenital heart disease and the number of children diagnosed with the condition, the researchers reported.

"There have been huge advances in cardiac surgery and pediatric cardiac care over the last 50 years. So what we are seeing is the result of a great success story of our ability to look after children with severe forms of heart disease who were not expected to survive and are now increasing in number," said lead researcher Dr. Ariane J. Marelli, director of the McGill Adult Unit for Congenital Heart Disease Excellence at McGill University, in Montreal.

The findings are published in the Jan. 9 online issue of Circulation.
Congenital heart defects are structural heart problems caused by abnormal formation of the heart or major blood vessels near the heart that occur before birth. Most heart defects obstruct blood flow in the heart or vessels near it, or cause blood to flow through the heart in an abnormal way.

The most significant increases in congenital heart disease were among two groups -- 13- to 17-year-olds and 18- to 25-year-olds, Marelli said. "But the fact that the prevalence increased more in adults means that these kids are surviving long enough to reach adulthood."

Congenital heart disease, once thought to be a disease of children, is increasingly becoming a disease of adults, Marelli added.

For the study, Marelli and her colleagues measured the prevalence of congenital heart disease using statistics from Quebec administrative databases. Marelli believes the findings in this Canadian population would be mirrored in the United States.
This means that in the United States, there are about 1.8 million people living with congenital heart disease, and that number is increasing. About 900,000 are adults and 900,000 are children, Marelli said.

The researchers also found that, in 2000, one of every 85 children had congenital heart disease, as did one of 250 adults. The increase in congenital heart disease is due to better diagnosis and earlier treatment, Marelli said.

Marelli thinks the greater number of people living with congenital heart disease means there needs to be more public awareness of the condition and better facilities to take care of these patients. "These patients, although they function well, need lifelong surveillance," she said.

One expert agreed that the increase in the number of adults and children living with congenital heart disease is the result of better diagnosis and surgery. And he expects the number to grow even more in the future.

"There have been marked improvements in the ability to diagnose congenital heart disease and substantial improvements in the medical and surgical treatment of these patients, so they are living substantially longer," said Dr. Gregg C. Fonarow, the Eliot Corday professor of cardiovascular medicine and science and director of the Ahmanson-UCLA Cardiomyopathy Center and co-director of the University of California, Los Angeles, Preventative Cardiology Program.

Fonarow noted that a growing number of medical centers, including UCLA's, have developed programs that focus on caring for adults with congenital heart disease. "It's still relatively limited," he said. "There are still hundreds of thousands of patients being cared for, often in settings where the expertise required for these patients doesn't exist."
More programs need to be developed, and more patients need access to the specialized care required to manage adults who have survived congenital heart disease, Fonarow said. "We would expect with further advances in surgery and new medications that this will be a population that will continue to grow," he said.

More information
The U.S. National Heart, Lung, and Blood Institute can tell you more about congenital heart defects.

SOURCES: Ariane J. Marelli, M.D., director, McGill Adult Unit for Congenital Heart Disease Excellence, McGill University, Montreal; Gregg C. Fonarow, M.D., Eliot Corday professor of cardiovascular medicine and science, director, Ahmanson-UCLA Cardiomyopathy Center, and co-director, UCLA Preventative Cardiology Program, University of California, Los Angeles; Jan. 9, 2007, Circulation
Copyright © 2007 ScoutNews, LLC. All rights reserved.

Circulation. 2007 Jan 8; [Epub ahead of print]

Congenital Heart Disease in the General Population. Changing Prevalence and Age Distribution.

Marelli AJ, Mackie AS, Msc RI, Rahme E, Pilote L.
McGill Adult Unit for Congenital Heart Disease Excellence, Montreal, Quebec, Canada.

BACKGROUND: Empirical data on the changing epidemiology of congenital heart disease (CHD) are scant. We determined the prevalence, age distribution, and proportion of adults and children with severe and other forms of CHD in the general population from 1985 to 2000.

METHODS AND RESULTS: Where healthcare access is universal, we used administrative databases that systematically recorded all diagnoses and claims. Diagnostic codes conformed to the International Classification of Disease, ninth revision. Severe CHD was defined as tetralogy of Fallot, truncus arteriosus, transposition complexes, endocardial cushion defects, and univentricular heart. Prevalence of severe and other CHD lesions was determined in l985, 1990, 1995, and 2000 using population numbers in Quebec. Children were subjects <18 years of age. The prevalence was 4.09 per 1000 adults in the year 2000 for all CHD and 0.38 per 1000 (9%) for those with severe lesions. Female subjects accounted for 57% of the adult CHD population. The median age of all patients with severe CHD was 11 years (interquartile range, 4 to 22 years) in 1985 and 17 years (interquartile range, 10 to 28 years) in 2000 (P<0.0001). The prevalence of severe CHD increased from 1985 to 2000, but the increase in adults was significantly higher than that observed in children. In the year 2000, 49% of those alive with severe CHD were adults.

CONCLUSIONS: The prevalence in adults and median age of patients with severe CHD increased in the general population from 1985 to 2000. In 2000, there were nearly equal numbers of adults and children with severe CHD.
PMID: 17210844 [PubMed - as supplied by publisher]