Mattan Arazi, Jonathan Kfir, Sayed Mansoor Sediqi, Abdul Rahim Majeed, Shabana Chaudhry, Alona Baum, Samina Behjat, Syed Ahmer Hamid, Allen Foster, Ido Didi Fabian
{"title":"阿富汗-巴基斯坦视网膜母细胞瘤“丝绸之路”转诊途径。","authors":"Mattan Arazi, Jonathan Kfir, Sayed Mansoor Sediqi, Abdul Rahim Majeed, Shabana Chaudhry, Alona Baum, Samina Behjat, Syed Ahmer Hamid, Allen Foster, Ido Didi Fabian","doi":"10.1038/s41433-025-03823-0","DOIUrl":null,"url":null,"abstract":"<p><strong>Background/objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":12125,"journal":{"name":"Eye","volume":" ","pages":""},"PeriodicalIF":2.8000,"publicationDate":"2025-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Afghanistan-Pakistan retinoblastoma \\\"Silk Road\\\" referral pathway.\",\"authors\":\"Mattan Arazi, Jonathan Kfir, Sayed Mansoor Sediqi, Abdul Rahim Majeed, Shabana Chaudhry, Alona Baum, Samina Behjat, Syed Ahmer Hamid, Allen Foster, Ido Didi Fabian\",\"doi\":\"10.1038/s41433-025-03823-0\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background/objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>\",\"PeriodicalId\":12125,\"journal\":{\"name\":\"Eye\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":2.8000,\"publicationDate\":\"2025-05-03\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Eye\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1038/s41433-025-03823-0\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"OPHTHALMOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Eye","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1038/s41433-025-03823-0","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"OPHTHALMOLOGY","Score":null,"Total":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.
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.
期刊介绍：
Eye seeks to provide the international practising ophthalmologist with high quality articles, of academic rigour, on the latest global clinical and laboratory based research. Its core aim is to advance the science and practice of ophthalmology with the latest clinical- and scientific-based research. Whilst principally aimed at the practising clinician, the journal contains material of interest to a wider readership including optometrists, orthoptists, other health care professionals and research workers in all aspects of the field of visual science worldwide. Eye is the official journal of The Royal College of Ophthalmologists.
Eye encourages the submission of original articles covering all aspects of ophthalmology including: external eye disease; oculo-plastic surgery; orbital and lacrimal disease; ocular surface and corneal disorders; paediatric ophthalmology and strabismus; glaucoma; medical and surgical retina; neuro-ophthalmology; cataract and refractive surgery; ocular oncology; ophthalmic pathology; ophthalmic genetics.
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