Strategies to reduce diagnostic delay and treatment abandonment in retinoblastoma: A scoping review of interventions in low- and Middle-Income Countries
Abstract
Background: Retinoblastoma is the most common intraocular malignancy of childhood, with an estimated 7,000–8,000 new cases annually worldwide. Over 80% of cases occur in low- and middle-income countries (LMICs), where survival typically remains below 50%, compared with rates exceeding 95% in high-income settings. Delayed diagnosis and treatment abandonment, driven by structural, financial, and sociocultural barriers, are the main contributors to this disparity.Objective: This scoping review aimed to identify and synthesize interventions implemented in LMICs to reduce diagnostic delay and improve treatment adherence in children with retinoblastoma, and to map associated implementation outcomes and evidence gaps.Materials and Methods: Following Joanna Briggs Institute methodology and PRISMA-ScR guidelines, MEDLINE, Embase, Web of Science, CINAHL, LILACS, African Index Medicus, and grey literature were searched from inception to October 2025. Two reviewers independently screened records and charted data on study characteristics, intervention components, implementation experiences, and outcomes. Findings were interpreted using CFIR and RE-AIM frameworks.Results: From 3,426 records, 2,814 were screened, and 118 studies from 32 LMICs were included. Interventions clustered into four domains: awareness and early detection; primary-care strengthening; treatment-adherence and abandonment-reduction strategies; and health-system capacity-building. Early-diagnosis approaches, including community campaigns, provider training, red-reflex screening, and digital tools, reduced median diagnostic delay by 1.5–5 months. Treatment-retention strategies were most effective: patient navigation lowered abandonment from 30–40% to 10–20%; psychosocial counseling reduced missed appointments by 20–30%; financial, transport, and accommodation support improved treatment continuity by 12–40%. Capacity-building increased specialist access, but long-term sustainability was rarely addressed. Definitions of delay, abandonment, and follow-up were inconsistent, and implementation outcomes were poorly reported.Conclusion: Despite heterogeneous evidence, strategies combining community awareness, primary-care strengthening, patient navigation, psychosocial and financial support, and capacity-building consistently improved early detection and treatment adherence. Scaling these within national systems with sustainable financing and standardized evaluation is essential to achieve equitable survival.
Fields of Study & Subjects
Ocular Oncology and Treatments
Acute Lymphoblastic Leukemia research
Brain Metastases and Treatment
Publication details
- Journal / source
- IP International Journal of Ocular Oncology and Oculoplasty
- Volume
- 11
- Issue
- 4
- Pages
- 140–148
- Publication date
- 9 January 2026