Patterns and outcomes of 975 patients with congenital heart disease from the Sudan Congenital Heart Disease Registry- (Sudan CHEER)

Abstract

Background

Congenital heart disease (CHD) constitutes an important cause of mortality and morbidity in children. In limited resource settings, data regarding patterns and outcomes of CHD are deficient.

Objectives

To describe the clinical and echocardiographic (echo) features as well as outcomes of patients with CHD seen at Sudan Heart Center.

Methods

This is a study reporting results of the Sudan Congenital Heart Disease Registry (Sudan CHEER) from January 2021–September 2022. Clinical, echo, and interventional management data were collected from hospital records as well as through telephone calls.

Results

975 patients with CHD were included (males 53 %). The most common age group was 1–12 months (40 %), and only 7 % were neonates. Acyanotic CHD constituted 71 % of patients. Eisenmenger's syndrome was present in 37 patients (3.8 %). Surgery was indicated in 472 patients (48 %) and performed in 167 (35 % of those in need). The Risk Adjustment Scale for CHD surgery was 2 for 70 % of cases. Interventional cardiac catheterization was indicated in 226 patients and done in 70 % of these. Only 56 % of patients were accessible for follow up period, mean of 12 months. Of unoperated patients, 25 died (6 %), mostly (43 %) having left to right shunts. The surgical operative mortality was 12 %; 80 % of those who underwent surgery did not have residual lesions. Interventional catheterization mortality was 0.6 %, and all survivors were well on follow up. Of those who had palliative interventional procedures, 70 % are still awaiting corrective surgery.

Conclusion

There are huge gaps in early diagnosis and access to interventions that need to be addressed to improve outcomes of patients with CHD in Sudan and similarly low-income countries.