One in five born with heart disease stop seeking cure when adults

A fifth of patients born before 1997 with congenital heart disease stopped receiving follow-up care by specialists, a study published in the Malta Medical Journal has revealed.

Since complete cure in cases of congenital heart disease is rarely achieved, lifelong specialist care is required to ensure early detection and the timely management of cardiac lesions and arrhythmias as these patients grow older.

And the main risk of patients falling out of the grid is that they would only present themselves when it is too late to get proper cure.

The study also shows the effectiveness of recall calls made by the health authorities: a letter inviting these patients for a check-up resulted in 33 out of the 41 ‘lost’ patients being examined again.

Five of these were found to suffer from “significant” heart disease which in some cases required surgery.

Malta has a higher rate of follow-up than other countries like Canada, where a study showed that 61% of patients were not being seen by a cardiologist by the age of 22

The study published in the Malta Medical journal shows that all 41 patients that had been lost to follow-up care were recalled to the GUCH (Grown Up with Congenital Hear) clinic through a postal appointment, with a second appointment given in case of a negative initial response.

The study shows that Malta has a higher rate of follow-up than other countries like Canada, where a study showed that 61% of patients were not being seen by a cardiologist by the age of 22.

Among the reasons for the relatively higher rate of follow-up in Malta is shorter distance to hospitals, the universal access to free medical care and the concentration of specialist care in one main centre.

But the authors of the study are still concerned that over one-fifth of patients with moderate or severe CHD were lost to follow-up, despite this combination of favourable circumstances.

“This highlights the relative ease with which these patients can ‘slip through the net’ and underlines the importance of implementing a robust infrastructure to ensure their safe transfer from paediatric to adult care,” the authors said.

The article proposes a more effective transition process from paediatric to adult care and an identification of patients with social and financial issues who “may be at higher risk of defaulting future appointments.”

The study was conducted by Maryanne Caruana and Oskar Aquilina from the Department of Cardiology and by Victor Grech from the Department of Pediatrics.