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

Abstract

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