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ItemPrevalence and factors associated with poor quality of life among adolescents with epilepsy attending the paediatric neurology and paediatric psychiatry clinics in Mulago national referral hospital(Makerere University, 2026-06)Background: Epilepsy is a major cause of disability among adolescents in low- and middle-income countries, with impacts extending beyond seizure control to physical, psychological, and social well-being. Despite this, evidence on the burden and determinants of poor quality of life (QoL) among adolescents with epilepsy in Uganda remains limited. Aim: To determine the prevalence of poor quality of life and its associated factors among adolescents with epilepsy attending Mulago National Referral Hospital. Methods: A hospital-based cross-sectional study was conducted among 383 adolescents aged 10–19 years attending the Paediatric Neurology and Psychiatry Clinics at Mulago National Referral Hospital. QoL was assessed using the QOLIE-AD-48, with poor QoL defined as a score <60. Data on psychological and clinical factors were collected using validated tools. Modified Poisson regression with robust standard errors was used to estimate adjusted prevalence ratios (aPR) and 95% confidence intervals (CI). Results: The prevalence of poor QoL was 83.3%. Adolescents aged 15–19 years were less likely to have poor QoL compared to those aged 10–14 years (aPR = 0.84, 95% CI: 0.73–0.97). Higher educational attainment was associated with increased prevalence of poor QoL, including primary (aPR = 1.59, 95% CI: 1.14–2.21), secondary (aPR = 1.90, 95% CI: 1.39–2.59), and tertiary education (aPR = 1.95, 95% CI: 1.42–2.67), compared to no formal education. Adolescents uncertain of their family history of epilepsy had lower prevalence of poor QoL (aPR = 0.87, 95% CI: 0.76–0.99), while normal self-esteem was protective (aPR = 0.84, 95% CI: 0.75–0.94). Other clinical and psychological factors were not independently associated with QoL after adjustment. Conclusion: Poor quality of life among adolescents with epilepsy in this setting is alarmingly high. The pattern of associations suggests that QoL in this population is less driven by traditional clinical markers and more shaped by developmental and psychosocial context, particularly self-perception and lived experience within educational environments. This reframes epilepsy care in adolescents as a multidimensional challenge, requiring integrated models that address not only disease control but also identity, resilience, and social functioning.
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ItemPrevalence and drivers of loss to follow-up among adolescents with tuberculosis at Mulago National Referral Hospital(Makerere University, 2026)Background: Adolescents with tuberculosis (TB) face unique obstacles across individual, interpersonal, health system, community, and policy levels, increasing their risk of loss to follow-up. The World Health Organisation classifies TB cases as pediatric (0–14 years) or adult (15+ years), obscuring the distinct profile of adolescents (10–19 years). Despite therapeutic advances, adolescents have loss to follow-up (LTFU) rates twice those of adults, reflecting unmet care needs. Objective: To determine the prevalence and drivers of LTFU among adolescents with TB at Mulago National Referral Hospital. Methods: A sequential mixed-methods study was conducted. Phase 1 involved retrospective review of TB registers (July 2023 – June 2025) to calculate LTFU prevalence. Phase 2 comprised in-depth interviews with purposively sampled adolescents who had been lost to follow-up, stratified by age, sex, and residence, plus key informant interviews with healthcare providers and community health workers. Quantitative data was analysed using STATA, and the qualitative data was analysed thematically using the Socio-Ecological Model. Results: Among 123 adolescents, the prevalence of LTFU was 9.8% (12/123). Most participants (75.6%) completed treatment, while 9.8% were lost to follow-up, 10.6% transferred out, and 4.1% died. The median duration in care before LTFU was 172 days (IQR: 60–182.5 days). Qualitative findings revealed multi-level drivers: individual (transport and distance barriers, treatment burden, side effects, school commitments); interpersonal (stigma, peer influence, lack of family support); health system (limited provider support, strict clinic appointments, drug stockouts); community (weak facility–community linkage, cultural and religious beliefs); and policy (reduced donor funding for community programs). Conclusion: One in ten adolescents with TB at Mulago Hospital was lost to follow-up. Drivers of LTFU span multiple levels, with transport costs, side effects, stigma, and health system inflexibility being prominent. Multi-level interventions, including decentralising TB services to lower-level health facilities, expanding national TB programs to include all adolescents, adolescent-friendly clinic models, and targeted social media campaigns, are urgently needed to improve treatment completion and align with the 2030 WHO End TB Strategy.
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ItemEarly outcomes and predictors of mortality among preterm neonates with respiratory distress syndrome admitted at Kawempe National Referral Hospital; A prospective study(Makerere University, 2026)Background: Respiratory distress syndrome (RDS) is a severe condition in preterm newborns, marked by a lack of surfactant, which results in high rates of illness and death. The burden of RDS is greater in low- and middle-income countries, where it significantly increases mortality rates and admissions to neonatal intensive care units. Despite global efforts to reduce neonatal mortality, RDS remains a major challenge, particularly in places like Uganda, where there is limited research specifically examining the outcomes of preterm neonates with RDS. The study aimed to determine early outcomes and predictors of mortality among preterm neonates with respiratory distress syndrome admitted to Kawempe National Referral Hospital (KNRH) in Uganda. Methods: This was a hospital-based prospective cohort study conducted at the Neonatal Special Care Unit of Kawempe National Referral Hospital among preterm neonates aged less than 24 hours whose respiratory distress commenced within the first 6 hours of life. Quantitative data were collected using structured questionnaires, focusing on maternal and neonatal characteristics, as well as early outcomes of the preterm babies. Early outcomes comprised survival and mortality assessed within three days of follow-up. The Kaplan-Meier method estimated survival curves, with differences between these curves analyzed using the log-rank test. Bivariate and multivariate Cox proportional hazards regression was used to assess the predictors of mortality with statistical significance set at <0.05. Results: Among the 201 preterm neonates with respiratory distress syndrome admitted to KNRH, 25(12.4%) died within the three-day follow-up, with most of the deaths (24), occurring within the first 2 days. Preterm neonates who did not receive xanthine derivatives had approximately three times higher hazard of death compared with those who received xanthine derivatives (aHR=2.99; p=0.034). Similarly, neonates delivered vaginally had more than four times increased hazard of death compared with those delivered by caesarean section (aHR=4.33; p=0.013). (Table 8). Conclusion: Preterm neonates with respiratory distress syndrome admitted at Kawempe National Referral Hospital experienced early mortality mainly within the first two days of life. The hospital needs to ensure timely access to caffeine therapy and consider safe delivery options for preterm births to improve survival outcomes in this high-risk population.
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ItemIncidence and risk factors for admissions among children attending the Sickle Cell Clinic at Mulago National Referral Hospital: A prospective cohort study nested in the SPARCO registry(Makerere University, 2026)Background: Despite improvements in care, sickle cell disease (SCD) remains a major cause of childhood morbidity and mortality in sub-Saharan Africa, with high rates of hospitalization. This study aimed to determine the incidence of hospitalizations and identify associated risk factors among children attending the Mulago National Referral Hospital Sickle Cell Clinic in the hydroxyurea era. Methods: This prospective observational cohort study was nested within the Sickle PanAfrican Research Consortium (SPARCO) Uganda Registry. Children aged 6 months to 18 years enrolled in the registry between June 2025 and January 2026 were enrolled and followed for six months. Data on socio-demographic characteristics, clinical history, maintenance treatment (including hydroxyurea adherence), and prior hospital admissions collected at baseline, supplemented by data from the registry. Enrolled children were followed up for 6 months and assessed for ill health requiring hospitalization. Incidence density was calculated as admissions per 1,000 participant-years, while time to first admission was analysed using Kaplan-Meier survival curves. Risk factors were evaluated using multivariable Cox proportional hazards regression, with adjusted hazard ratios (aHR) and 95% confidence intervals (CI) reported. Statistical significance was set at p < 0.05. Results: A total of 405 children and the median age was 5.0 years (IQR 3.0-8.0), and 205 were male. Of the cohort, 316 (78.0%) were on hydroxyurea at baseline, however, only 57% had good adherence. Overall, a total of 142 occurred translating into an incidence density of 701 admissions per 1,000 participant-years (95% CI 592–828). A total of 142 (35.1%) had at least one hospitalization while 30 (21.1%) had two admissions during the study period. Vasoocclusive pain crises (69.0%: 98/142), severe anaemia (29.6%: 42/142), and acute chest syndrome (21.8%: 31/142) were the most common reasons for hospitalization. The probability of remaining admission-free was 78.2% at three months and 64.9% at six months. In multivariable analysis, younger age (<5 years) (aHR 1.78, 95% CI 1.24–2.56, p=0.002), lower caretaker education (aHR 1.45, 95% CI 1.10–1.92, p=0.009), greater distance to facility (>10 km) (aHR 1.62, 95% CI 1.18–2.23, p=0.003), and history of frequent crises (aHR 2.10, 95% CI 1.45–3.04, p<0.001) independently increased the risk of admission. Hydroxyurea use (aHR 0.52, 95% CI 0.34–0.79, p=0.002) and high baseline haemoglobin (aHR 0.78 per g/dL, 95% CI 0.68–0.90, p<0.001) were strongly protective. inadequate knowledge, persistent pain, poor communication, and drug stock-outs. Overall, 28 children (6.9%) were lost to follow-up and 2 died (both from acute chest syndrome). Conclusion: Despite widespread hydroxyurea utilisation, hospitalisation rates remain high among Ugandan children with SCD, driven primarily by vaso-occlusive crises and infections. Younger age and socioeconomic/access barriers increase risk, while hydroxyurea and better haemoglobin status are protective. Keywords: Sickle cell disease, hospitalisation, incidence, risk factors, hydroxyurea, Uganda, SPARCO registry
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ItemPatterns of cardiac diseases and risk factors forin-hospital mortality among children admitted to Mulago National Referral Hospital(Makerere University, 2026)Background: Paediatric cardiac diseases, including congenital and acquired heart conditions, are a major cause of morbidity and mortality in low-resource settings such as Uganda. Despite the dual burden of congenital heart disease (CHD) and preventable acquired conditions like rheumatic heart disease, local evidence on disease patterns and determinants of in-hospital mortality remains limited. Objective: To describe the patterns of cardiac diseases, estimate the in-hospital mortality, and identify risk factors for mortality among children admitted to Mulago National Referral Hospital. Methods: A retrospective cohort study was conducted using medical records of children aged 0–17 years admitted to the cardiopulmonary ward (Firm C) with confirmed cardiac disease from January 2015 to January 2025. Demographic, clinical, laboratory, and echocardiographic data were extracted. Disease patterns were summarized descriptively. In-hospital mortality was expressed as a proportion and incidence density with 95% confidence intervals (CI). Cox proportional hazards regression and Kaplan-Meier curves were used for survival analysis. Results: A total of 521 children were included, with a mean age was 3.0 ± 4.2 years; 41.8% were infants aged 1-12 months and 50.3% were male. Congenital heart disease accounted for 81.6% of admissions, predominantly ventricular septal defect (32.2%), tetralogy of Fallot (17.1%), and atrial septal defect (11.9%). Acquired heart disease comprised 18.4% of admissions, mainly rheumatic heart disease (8.8%) and dilated cardiomyopathy (5.4%). The overall in-hospital mortality was 21.1% (110/521; 95% CI: 17.6–24.9). The incidence density of mortality was 25.2 deaths per 1000 persondays (95% CI 20.7-30.4), with median hospital stay of 6.0 days (IQR: 3.0–11.0). Independent predictors of mortality were malnutrition (aHR 2.38, 95% CI: 1.28-4.42), heart failure (aHR 2.61, 95% CI: 1.41-4.83), severe pneumonia (aHR 2.89, 95% CI: 1.48-5.64), and lower platelet count (aHR 0.75 per 100×10⁹/L increase, 95% CI: 0.60-0.94). Cardiac diagnosis was not independently associated with mortality. Conclusion: Children admitted with cardiac disease at Mulago National Referral Hospital experience substantial in-hospital mortality. Mortality was primarily associated with potentially modifiable clinical conditions including malnutrition, heart failure and severe pneumonia rather than the underlying cardiac diagnosis itself. Strengthening early recognition and integrated management of these comorbidities offers an immediate opportunity to improve inpatient survival even within current resource constraints. Keywords: congenital heart disease, acquired heart disease, rheumatic heart disease, paediatric cardiology, mortality, heart failure, Uganda.