Abstract

ObjectivesThe aim of this study was to describe the profile of Congenital Heart Disease [CHD] and access to definitive surgical or catheter-based care among children attending a regional referral hospital in Northern Uganda.MethodsThis was a retrospective chart review of all children aged less than 17 years attending Gulu Regional Referral Hospital Cardiac clinic from November 2013 to July 2017.ResultsA total of 295 children were diagnosed with CHD during the study period. The median age at initial diagnosis was 12 months [IQR: 4–48]. Females comprised 59.3% [n =  175] of cases. Diagnosis in the neonatal period accounted for only 7.5 % [n = 22] of cases. The commonest CHD seen was ventricular septal defect [VSD] in 19.7 % [n = 58] of cases, followed by atrioventricular septal defect (AVSD) in 17.3 % [n = 51] and patent ductus arteriosus (PDA) in 15.9 % [n = 47]. The commonest cyanotic CHD seen was tetralogy of Fallot [TOF] in 5.1 % [n = 15], followed by double outlet right ventricle [DORV] in 4.1 % [n = 12] and truncus arteriosus in  3.4% [n = 10]. Dextro-transposition of the great arteries [D-TGA] was seen in 1.3 % [n = 4]. At initial evaluation, 76 % [n = 224] of all CHD cases needed definitive intervention and 14 % of these children [n = 32] had accessed surgical or catheter-based therapy within 2 years of diagnosis. Three quarters of the cases who had intervention [n = 24] had definitive care at the Uganda Heart Institute (UHI), including all 12 cases who underwent catheter-based interventions. No mortalities were reported in the immediate post-operative period and in the first annual follow up in all cases who had intervention.ConclusionsThere is delayed diagnosis of most rural Ugandan Children with CHD and access to definitive care is severely limited. The commonest CHD seen was VSD followed by AVSD. The majority of patients who had definitive surgery or transcatheter intervention received care in Uganda.

Highlights

  • There has been considerable progress in child survival, and millions of children born today have better survival than in 1990, with worldwide mortality rates falling to 39 per 1,000 live births in 2017 compared to 93 per 1,000 live births in 1990 [1]

  • In September 2013 a satellite cardiac clinic was established at Gulu Regional Referral Hospital (GRRH) in Gulu, in northern Uganda

  • A total of 888 children attended the cardiac clinic during the study period

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Summary

Introduction

There has been considerable progress in child survival, and millions of children born today have better survival than in 1990, with worldwide mortality rates falling to 39 per 1,000 live births in 2017 compared to 93 per 1,000 live births in 1990 [1]. It is estimated that in the period between 2000 and 2017 , an annual reduction in child mortality rates of 4.2 % was registered in sub-Saharan Africa [1]. This was possible largely due to considerable investments in public health interventions targeting common childhood illnesses such as vaccination programs, treatment of infectious diseases, and ensuring access to clean water and sanitation among others [1]. With rising populations and high total fertility rates among women in sub-Saharan African countries, there are rising numbers of children born and or living with CHD in these countries. Poor governance and inadequate financial and skilled human resources for health pose considerable challenges in the implementation of possible interventions to reduce the burden of CHD in these countries

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