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.
Background: Valve replacement surgery (VRS) improves clinical outcomes in patients with severe rheumatic heart disease (RHD). However, lifelong anticoagulation and frequent monitoring are required, which potentially impacts health-related quality of life (HRQoL). In this study, we assessed the HRQoL of people with RHD in Uganda following VRS.Methods: This was a hospital-based, cross-sectional study conducted between March and August 2021. Eligible participants were individuals who had VRS before the age of 18 years. The Pediatric Quality of Life Inventory-Cardiac Module (PedsQL-Cardiac module) was used to evaluate HRQoL. A total mean score of ≥ 80% was considered as optimal HRQoL.Results: Of the 83 eligible participants, 52 (60.5%) were female, with a median age of 18 (interquartile range: 14-22) years. Most participants had NYHA I functional status (n = 79, 92%). Most (n = 73, 92.4%) surgeries were performed outside of Uganda, and 61 (72.6%) were single mechanical valve replacement. Almost half (n = 45, 54%) expressed no concern about being on life-long warfarin therapy. However, 24 (29.3%) feared bleeding. The optimal mean score of cardiac-specific HRQoL was achieved in 50 (60.2%) of participants. Factors associated with optimal HRQoL were body mass index (BMI) (adjusted odds ratio (aOR), 1.2, 95% Confidence Interval: 1.1-1.3, p = 0.006), being afraid of bleeding or bruising (aOR: 1.5, 95% CI: 1.21-2.47, p = 0.004), acceptance of having an artificial valve (aOR: 2.7, 95% CI; 1.64-3.81, p < 0.001). Conclusion:HRQoL was optimal in about three in five participants following VRS. Increasing BMI and acceptance of artificial valve were significantly associated with optimal HRQoL.
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