Mapping access to retinoblastoma care: Geographic disparities and service availability across Africa, and West and Central Asia.

Abstract

1525 Background: Retinoblastoma, the most common childhood eye cancer, is highly manageable with prompt diagnosis and appropriate care. Access to specialist services is, however, unequal in low- and middle-income countries (LMICs), leading to unnecessary morbidity and death. This study assesses the geographic reach of retinoblastoma treatment centers, estimates the burden of cases relative to available services, and analyzes referral barriers—in terms of distance and cost of travel—across Africa, West and Central Asia. Methods: We used the One Retinoblastoma World Map to categorize African, West and Central Asian (excluding India, China, and Mongolia eastern countries) specialized treatment centers. The centers were classified as Tier 1 (comprehensive care with focal therapy and radiotherapy) or Tier 2 (lacking at least one essential treatment modality). The availability of genetic testing was also recorded. Country-specific incidence of retinoblastoma was estimated at 1 case per 18,000 live births, using UN population and birth rate data. For countries without Tier 1 or Tier 2 centers, we calculated minimum travel distances and estimated one-way costs for a child and guardian to reach the nearest facility. Results: Among 71 countries analyzed, there were just 28 (39%) countries with Tier 1 or Tier 2 retinoblastoma centers and 43 (61%) countries without such centers. Tier 1 centers were available in just 16 countries (22.5%), predominantly middle- and high-income countries: only 2 of 25 low-income countries (Uganda, Mali) had access to Tier 1 versus 11 of 39 middle-income and 3 of 7 high-income countries (Saudi Arabia, Israel, Russia). Notably, 64% of low-income and 59% of middle-income countries did not have any retinoblastoma center. Twenty-two high-burden nations (≥10 cases/year) had no Tier 1 or Tier 2 center, including the Democratic Republic of Congo (242 cases/year), Mozambique (65), and Yemen (63). Average one-way travel distance in these environments exceeded 1,000 km at a cost of nearly $1,000 per referral trip. While some nations (e.g., Nigeria, Egypt, Pakistan) had acceptable case-to-center ratios (50–80 cases/center), others (e.g., Uganda, Tanzania) had possible overcapacity with single-center systems. Genetic testing was accessible in just 24% of nations. Conclusions: Despite potential underreporting of more recently established centers, this study reveals profound inequalities in the availability of retinoblastoma care, with most LMICs lacking sufficient essential services. Excessive case volumes within underserved regions overwhelm existing infrastructure and necessitate prompt interventions: (1) focused expansion of Tier 1 hubs within regions of greatest need, (2) streamlining of regional referral chains, and (3) integration of genetic and focal treatments to reduce disparities in survival.