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Improving survival of retinoblastoma in Uganda
  1. Keith M Waddell1,2,
  2. Kenneth Kagame1,2,
  3. Andrew Ndamira2,
  4. Amos Twinamasiko2,
  5. Susan V Picton3,
  6. Ian G Simmons3,
  7. Paul Revill4,
  8. W Tom Johnston5,
  9. Robert Newton5,6,7
  1. 1Ruharo Eye Hospital, Mbarara, Uganda
  2. 2Departments of Ophthalmology and Paediatrics, Mbarara University of Science and Technology, Mbarara, Uganda
  3. 3Departments of Ophthalmology and Paediatric Oncology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  4. 4Centre for Health Economics, University of York, York, UK
  5. 5Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York, UK
  6. 6Medical Research Council/Uganda Virus Research Institute (MRC/UVRI) Research Unit on AIDS, Entebbe, Uganda
  7. 7International Agency for Research on Cancer, Lyon, France
  1. Correspondence to Dr Robert Newton, MRC/UVRI Research Unit on AIDS, PO Box 49, Entebbe, Uganda; Rob.Newton{at}; Rob.Newton{at}


Background Diagnostic delay results in relatively high mortality among children with retinoblastoma in Uganda, where treatment was limited to surgery and, for some, radiotherapy. In order to improve outcomes, a simple programme of neoadjuvant and adjuvant chemotherapy was introduced. Here we report survival before and after this change to medical practice.

Methods Affordable standard off-patent chemotherapy agents were administered by trained paramedical staff to groups of patients at the same time. Survival before and after the introduction of chemotherapy was monitored. Between 2006 and 2013 a total of 270 patients with retinoblastoma were included, 181 treated prior to chemotherapy and 89 after (beginning in 2009). We had 94% follow-up and 249 had histological verification of diagnosis.

Results Using a proportional hazards model adjusted for age, sex and laterality, children treated after chemotherapy was introduced had a 37% lower risk of dying (HR 0.63, 95% CI 0.41 to 0.99) compared with children treated before. Prior to the introduction of chemotherapy only 15% of children who survived bilateral disease retained vision after treatment compared with 71% after chemotherapy.

Conclusions The introduction of chemotherapy proved safe and cost-effective in non-specialist hands and was associated with significant improvements in survival and, among bilateral cases, in preserving vision.

  • Epidemiology
  • Retina

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