Profile of Congenital Heart Disease and Access to Definitive Care Among Children Seen at Gulu Regional Referral Hospital in Northern Uganda: a Four-year Experience

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Abstract Objectives: The 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. Methods: This 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. Results: A total of 299 children were diagnosed with CHD during the period. The median age at diagnosis was 12 months ([QR: 4 – 48] with females representing 59.2% [n=177] of cases. Neonates comprised only 7.4% [n=22]. The commonest CHD seen was ventricular septal defect [VSD] in 19.4% [n=58] of cases, followed by atrioventricular septal defect (AVSD) in 17.1% [n=51] and patent ductus arteriosus (PDA) in 15.7% [n=47]. The commonest cyanotic CHD seen was tetralogy of Fallot [TOF] in 5% [n=15], followed by double outlet right ventricle [DORV] in 4% [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, 75% [n=224] of all CHD 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 UHI including all 12 cases who underwent catheter-based interventions. Conclusions: There is delayed diagnosis of most rural Ugandan Children with CHD and access to definitive care is severely limited. In-country programs offer the most feasible option to increase access to definitive care.

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