NEW STUDY. Adult patients with congenital heart disease are living longer but have a greater risk of heart failure and other heart complications. This is the finding of a new study by researchers at the University of Gothenburg and Sahlgrenska University Hospital.
Zacharias Mandalenakis is the last author of the article now being published in the journal Circulation. Zacharias is a chief physician at the ACHD Center at Sahlgrenska University Hospital and associate professor at Sahlgrenska Academy.
“We can see a higher risk in terms of a range of complications. The risk of heart failure is nine times higher in adults with congenital heart disease compared with peers without a congenital heart condition. It can almost be considered like an epidemic in this patient group,” he says.
More knowledge needed
That more children with congenital heart disease survive means that these patients need continued highly specialized care. They need lifelong follow-up and treatment for their heart problems and often require repeated heart surgeries or interventions.
“This presents a great challenge for the medical care system. This is especially true since we currently lack knowledge and proven experience in treating people with congenital heart failure,” says Mikael Dellborg, a senior professor of cardiology at the University of Gothenburg and first author of the article.
The research team continues to study risk factors that influence prognosis, with the goal of increasing survival rates for sufferers of congenital heart disease. The research team is examining how individuals born with heart disease fare in adulthood. Previous research shows that the average survival rate of children with congenital heart disease has increased sharply.
“A previous study from our team indicated that survival in children in Sweden with congenital heart disease has increased from about 85 percent in the 1980s to 97 percent today,” says Zacharias Mandalenakis. “We have become better at caring for these patients, while more of them survive beyond childhood because of advances in diagnostics and pediatric heart surgery in recent decades.”
Greater need for medical care throughout life
This is the first international study to show that the risk of developing cardiovascular disease is 10 to 100 times higher for patients with congenital heart disease compared with the general population.
“The findings show the importance of early understanding of potential long-term risks for patients born with a complex heart condition. Doing so expands opportunities for preventive treatments and interventions. We track patients born with this type of heart condition throughout life since we believe that continuity is also important,” says Mandalenakis.
The mortality rate among patients with congenital heart disease has fallen most among the group with the most complex heart conditions. In this register-based study, the researchers surveyed more than 37,000 adults with congenital heart disease born between 1950 and 1999 and just under 413,000 matching individuals in a control group without congenital heart disease. All subjects have been followed up in the register starting in 1968 until the date of death or until 2017, when the study was completed.
Almost 2,000 (5.2 percent) patients with congenital heart disease and about 6,700 (1.6 percent) control subjects died. According to the researchers’ calculations, mortality for patients with congenital heart disease was just over three times higher compared to matched controls. Despite this, more than three out of four of patients with congenital heart disease who were alive at the age of 18 lived beyond their 60th birthday.
Another article (research letter) has been published in Circulation, where Niklas Bergh is the first author. The article is about the risk of heart failure in patients with congenital heart defects.
CONGENITAL HEART DISEASE
Congenital heart disease, the most common congenital condition, occurs in two percent of all newborns. Past and current advances in pediatric cardiac care, both in terms of diagnostics and measures/surgery, have allowed those born with heart conditions to have an almost normal lifespan. In Sweden about 40,000 adults have congenital heart disease.
The ACHD Center for adults with congenital heart disease at Sahlgrenska University Hospital in Gothenburg is one of two complete ACHD units in Sweden. ACHD is international designation for Adult Congenital Heart Disease.
- Title: Adults with Congenital Heart Disease: Trends in Event-Free Survival Past Middle Age
- Title: Risk of Heart Failure in Congenital Heart Disease: A Nationwide Register-Based Cohort Study (research letter)
BY: SAHLGRENSKALIV / HEART-LUNG FOUNDATION / ELIN LINDSTRÖM
