Retinoblastoma in Rwanda: infant onset is associated with bilateral disease and improved survival

• Retinoblastoma among children in Rwanda is frequent. • A bilateral disease is predominantly seen in younger infants. • Younger patients tend to harbor a relatively better survival outcome. • Early diagnosis and access to standard treatment merit to be implemented. To describe clinical presentation patterns, treatment intent, and survival outcomes among children diagnosed with retinoblastoma in Rwanda, and to identify factors associated with overall survival in a national referral-center cohort. We conducted a retrospective cohort study including 300 consecutive children diagnosed with retinoblastoma at the national ophthalmology referral unit in Rwanda between 2011 and 2020. Demographic, clinical, and treatment data were abstracted from medical records. Overall survival was estimated using Kaplan–Meier methods and compared with log-rank tests. Multivariable Cox proportional hazards regression was performed including variables with P < 0.10 in univariate survival analyses. A study-specific Severity Index Score (SIS), based on age and laterality, was used descriptively but excluded from multivariable modeling. Median overall survival was 274 days (IQR 139–613). Survival differed significantly by age at diagnosis ( P < 0.0001), residence ( P < 0.001), diagnosis period ( P = 0.02), SIS category ( P = 0.03), and treatment intent ( P < 0.0001). In adjusted analyses, children aged 2–5 years had higher mortality compared with those aged ≤1 year (HR 2.61, 95% CI 1.38–5.38), while palliative-intent treatment was associated with markedly increased mortality (HR 10.38, 95% CI 6.13–18.44), reflecting advanced disease at presentation. Bilateral disease was associated with lower adjusted mortality (HR 0.61, 95% CI 0.38–0.99). Survival among children with retinoblastoma in Rwanda remains limited and is primarily driven by late presentation and disease severity at diagnosis. Earlier detection, timely referral, and access to curative-intent treatment are critical to improving outcomes in this setting.