HEALTH-SYSTEM DETERMINANTS OF RETINOBLASTOMA OUTCOMES: A STRUCTURED AUDIT OF DIAGNOSTIC, THERAPEUTIC, AND SUPPORTIVE RESOURCES RELATIVE TO SIOP STANDARDS

Background: Retinoblastoma is the most common intraocular malignancy of childhood and is highly curable when detected early, with survival exceeding 95% in high-income countries. In many low- and middle-income countries (LMICs), survival remains below 40% due to systemic and cultural barriers. Although the International Society of Paediatric Oncology (SIOP) defines minimum standards for manpower and infrastructure, outcomes in Nigeria remain poor despite progress towards meeting these benchmarks. To our knowledge, this is the first systematic audit in Nigeria to benchmark available resources and outcomes against SIOP standards, thereby providing a unique lens on why survival remains unacceptably low despite apparent infrastructural progress.

Methods: A descriptive cross-sectional audit was conducted among children with retinoblastoma managed at AEFUTHA from July 2016 to June 2022. Data were obtained from patient records, operative notes, chemotherapy registers, and departmental audits. Resources were benchmarked against SIOP standards, and outcomes were stratified by intraocular versus extraocular disease.

Results: At last review, 5/26 (19.2%) were alive and stable, 3/26 (11.5%) were on active treatment, 6/26 (23.1%) had died of metastatic disease, 1/26 (3.8%) received palliative care for brain metastasis, 4/26 (15.4%) had relapsed following non-compliance, and 7/26 (26.9%) had unknown outcome due to loss to follow-up. On-site facilities included examination under anaesthesia, chemotherapy, enucleation with implants, cryotherapy, and customised prostheses; radiotherapy was accessible 75 km away. Human resources broadly met SIOP benchmarks. Interventions included chemotherapy (65.4%), enucleation (30.8%), and cryotherapy.

Conclusion: Survival from retinoblastoma at AEFUTHA remains poor despite the presence of trained manpower and essential infrastructure, largely because children arrive with advanced disease. Community education, financial protection, and culturally sensitive counselling are urgently needed to reduce late presentation and treatment abandonment. By aligning local outcomes with SIOP benchmarks, this audit contributes a Nigerian perspective that strengthens the evidence for integrated health-system and policy responses aimed at narrowing the survival gap between high-income and resource-limited settings.