Adults Operated for Congenital Heart Disease in Childhood. How are they Today?

We sought to assess the cardiac status of adults who were operated for congenital heart disease in childhood.

All congenital cardiac operations performed at Hadassah Medical Center between 1988 and 1995 were reviewed. Excluded were operation for repair of simple lesions: atrial septal defect and patent ductus arteriosus. Medical data was collected for the patient’s files. Survivors were contacted and interviewed.

Mortality was 16.5% in 535 Israeli patients and 15.2% in 118 Palestinian patients. Of the 285 Israeli survivors 94 were contacted and 90 (96%) agreed to participate.

The median age 25 years (range 20-40). 47% are cared for in ACHD units, 24% by a general cardiologists and 29% are not under cardiology care. More women (82%) than men (60%) are cared for by ACHD or a cardiologist (p=0.02). Cardiac morbidity affects 37% of patients; 15% arrhythmia, 5% heart failure, 8% cyanosis, 8% pulmonary hypertension. 15% are treated with cardiac medications. In 33% of the patients NYHA is >1, and in 12% NYHA is 3 or 4.

Fewer patients (5%) under ACHD care than those under general cardiologist or no care (23%) smoke (p=0.04). Only 56% of patients have knowledge about their heart problem, while knowledge is higher (79%) in patients under ACHD care than those under general cardiologist (45%) or no care (50%, p=0.04). Only 4% of patients not cared for in ACHD unit, are aware of the existence of such units, and most of them (58%) expressed interest in such care when informed.

Adults operated for congenital heart disease in childhood suffer significant morbidity. Fewer than half are cared for in ACHD units. Awareness of the cardiac condition is poor. Patients not cared for in ACHD units are not aware of their existence. There is need for better patient and physician education regarding care for these patients.