Patients with congenital heart disease are up to 85 times more likely to suffer from atrial fibrillation as adults. The researchers behind a study, published in the journal Circulation, are now advocating more frequent screenings of the most vulnerable groups.

We need to identify those who have the most increased risk of complications. Today, they are young adults and we are not sure what will happen once they get into their 50’s or 60’s, says Zacharias Mandalenakis, cardiology researcher at Sahlgrenska Academy and cardiology consultant at Sahlgrenska university hospital.

By cross-checking data from the patient register, the cause of death register, and the total population register, the researchers have managed to identify 21,982 people with congenital heart disease, born in 1970-1993. Also included in the study are 219,816 gender-, age-, and county-matched control subjects.

They are all born during a period of great advancements in health care with early diagnoses and efforts, heart operations on newborns, repeat surgeries as needed, and so on.

A desire to prevent

They survive and cope rather well but unfortunately they develop other heart problems, such as atrial fibrillation and heart failure. It is a challenge for us to discover it early and take preventative actions, says Zacharias Mandalenakis.

The group with the most complex congenital heart disease proved to have the highest relative risk of atrial fibrillation; 85 times higher than the control subjects. One out of twelve in this group developed atrial fibrillation and out of those subjects, one in ten developed heart failure.

Once all the severity degrees of congenital heart disease were added together, the risk of atrial fibrillation was 22 times higher than in the control subjects. In patients with congenital heart disease and atrial fibrillation, the risk of heart failure was eleven times higher than in those with congenital heart disease, but without atrial fibrillation.

New knowledge

Four out of ten people with congenital heart disease had undergone at least one operation. The group of operated subjects had an almost 4-fold increased risk of developing atrial fibrillation compared to those with congenital heart disease who had not undergone surgery. The risk was the highest for subjects with an atrial septal defect, regarded by many as a minor heart defect.

We have previously used clinical practice as a reference, but with this study we have discovered sub-groups that we need to pay special attention to, and perhaps administer anticoagulation or antiarrhythmic treatment to prevent them from being affected by heart failure, stroke, or premature death, says Zacharias Mandalenakis.

As someone who is clinically active at the university hospital’s so-called GUCH unit, with national care in the area of congenital heart disease, he can attest to the preparedness that many patients themselves have.

They try to exercise a lot and stay healthy in other respects, and we keep in very good contact with our patients. As soon as something happens—breathlessness or heart palpitations—they seek help immediately, he explains.