Adult Congenital Heart Disease Registry at Cairo University

Abstract

Aims: To establish a clinical registry for adult patients with congenital heart disease (CHD) managed in Cairo University Hospitals, aiming at description of the pattern and clinical profile of such patients. Methods: Patients were recruited from both Cardiovascular Medicine Department Outpatient Clinic and inpatient wards of Cairo University Hospitals. Clinical data were collected from hospital records and directly from patients by treating cardiologists. Collected data were then registered in a dedicated database system and subsequently analyzed. Results: Patients (49% males) ranged in age from 16 to 63 years, with a median of 25 years. Fifty-one patients were in the age-group from 20 to 30 years, with only 9% aged 50 years or older. Seventy-eight patients had acyanotic lesions, with atrial septal defect being the most common primary diagnosis (20% of total lesions). The remaining 22 patients had cyanotic heart disease, with tetralogy of Fallot being the predominant diagnosis (45% of cyanotic lesions). Six patients presented with infective endocarditis in the setting of CHD. Four women (8% of females) presented during pregnancy. Forty-six patients were sent for surgical correction/repair, while percutaneous intervention was planned in 20 patients. Conclusions: A new registry of adult patients with CHD managed in Cairo University Hospitals provides useful information, including the extent to which congenital heart defects are underdiagnosed and undertreated during infancy and childhood. In addition, those who were previously treated early in life require long-term follow-up in specialized centers. Establishment of a multidisciplinary team with expert physicians (cardiologists, dentists, obstetricians, and psychiatrists), cardiac surgeons, and nurses may be facilitated by development of a dedicated database system. Continuous financial support is a major challenge.