Arazi Mattan, Kfir Jonathan, Sediqi Sayed Mansoor, Majeed Abdul Rahim, Chaudhry Shabana, Baum Alona, Behjat Samina, Hamid Syed Ahmer, Foster Allen, Fabian Ido Didi
Rb-NET, International Centre for Eye Health, London School of Hygiene & Tropical Medicine, London, United Kingdom.
Medicine faculty, Kabul University of Medical Sciences (KUMS), Kabul, Afghanistan.
Eye (Lond). 2025 May 3. doi: 10.1038/s41433-025-03823-0.
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.
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.
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.
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.
背景/目的：阿富汗没有专门的视网膜母细胞瘤（Rb）治疗中心。我们旨在描述通过阿富汗-巴基斯坦Rb“丝绸之路”转诊途径将阿富汗患有Rb的儿童转诊至巴基斯坦进行治疗的第一年经验和结果。
对在国家眼科康复组织（NOOR）眼科护理中心就诊的疑似Rb儿童进行了为期12个月的前瞻性分析（2023年1月至2024年1月）。利用与Rb-NET专家的在线会诊来确诊Rb，并确定符合条件的患者转诊至巴基斯坦的Rb治疗中心。使用结构化的Microsoft Excel电子表格记录临床表现和结果数据，整个团队对其进行监测以确保准确性和完整性。主要结果包括成功转诊至巴基斯坦的Rb治疗中心以及1年随访时儿童存活情况。次要结果侧重于确定患者成功转诊的障碍。
在纳入研究的23名儿童中，12/23（52%）因白瞳症转诊，11/23（48%）为女性，7/23（30%）为双侧Rb，无家族性Rb病例。总体而言，5/23（22%）的儿童被诊断为眼外疾病，6/23（26%）在诊断时已有远处转移。只有9/23（39%）的儿童成功抵达巴基斯坦的Rb治疗中心。在最后一次随访时，5/23（22%）的儿童死亡，6/23（26%）被确认存活，12/23（52%）失访。患者转诊最常见的障碍包括在转诊过程中难以跨越阿富汗/巴基斯坦边境（12/23；52%）和经济障碍（11/23；48%）。
本报告强调了在医疗保健系统薄弱的国家提高可治疗儿童癌症患儿生存率面临的巨大困难。这条转诊途径的第一年经验提供了宝贵的经验教训，可指导在阿富汗建立一个专门的Rb治疗中心。
