Patterns, outcomes and trends in hospital visits of un-operated and operated children with rheumatic heart disease in Sudan.

Background: Rheumatic heart disease (RHD) is an important public health problem in Sudan.

Methods: Clinical and echocardiographic findings from an RHD registry in Khartoum (January 2005-March 2018) are described. Operated and un-operated children were prospectively followed. The quality of life (QOL) for children who had surgery was evaluated using pediatric QOL cardiac module.

Results: A total of 818 children (51% males) were included, patients were clustered in White Nile and Kordofan area. RHD was found in 78% and acute rheumatic fever (ARF) in 22% of cases. RHD was severe in 65% and the most common lesion was mitral regurgitation (MR) in 37%. Follow-up of 107 un-operated children for a mean of 2 years revealed major complications in 38% including a mortality of 14%. Severe valve dysfunction tended to remain unchanged. There were 3 deaths in children with severe valve lesions immediately following benzathine penicillin injections. Only 19% of patients underwent surgery with an average post-operative mortality of 10.5% in the last 8 years. Of those, only 34 were reached for follow-up (23%), all were in New York Heart Association (NYHA) class 1, however adverse outcomes were observed including noncompliance with benzathine penicillin and warfarin (51% and 29% respectively) and more than mild valve dysfunction in 35%. All children who had valve surgery have a good QOL scores. In the last 3 years, the outpatient visits, admissions and mortality rates decreased by 20%, 48% and 22% respectively.

Conclusions: RHD is clustered in certain areas and presents with severe valve lesions with a high mortality for un-operated patients. Operative mortality improved over the last years but the follow-up rates are poor and adverse outcomes are common. There is an apparent trend of decline in the number of patients with RHD seen at referral hospitals.