Afghanistan–Pakistan retinoblastoma “Silk Road” referral pathway

Background/objectives: There is no specialist retinoblastoma (Rb) treatment centre in Afghanistan. We aimed to describe the first-year experience and outcome of referring Afghani children with Rb to Pakistan for treatment via the Afghanistan-Pakistan Rb "Silk-Road" referral pathway. Methods: A 12-month prospective analysis (January 2023-January 2024) was conducted on children with suspected Rb presenting at National Organisation for Ophthalmic Rehabilitation (NOOR) eye care centres. Online consultations with specialists from the Rb-NET were used to confirm Rb diagnoses, and eligible patients were identified for referral to Rb treatment centres in Pakistan. Data on clinical presentation and outcomes were recorded using a structured Microsoft Excel spreadsheet, which was monitored by the entire team to ensure accuracy and completeness. The primary outcomes included successful transfer to Rb treatment centres in Pakistan and child survival at 1-year follow-up. Secondary outcomes focused on identifying barriers to successful patient transfer. Results: Of the 23 children included in the study, 12/23 (52%) were referred due to leukocoria, 11/23 (48%) were female, 7/23 (30%) presented with bilateral Rb, and none had familial Rb. Overall, 5/23 (22%) children were diagnosed with extraocular disease, and 6/23 (26%) had distant metastases at the time of diagnosis. Only 9/23 (39%) children successfully reached Rb treatment centres in Pakistan. At the last follow-up, 5/23 (22%) children had died, 6/23 (26%) were confirmed alive, and 12/23 (52%) were lost to follow-up. The most common obstacles to patient transfer included difficulty crossing the Afghani/Pakistani border (12/23; 52%) and economic barriers (11/23; 48%) throughout the referral process. Conclusions: This report highlights the immense difficulties in improving child survival from a treatable childhood cancer in a country with poor health care systems. The first-year experience of this referral pathway offers valuable lessons, which can guide the creation of a dedicated Rb treatment centre within Afghanistan.