A ten-year study of Retinoblastoma in Uganda: An approach to improving outcome with limited resources. (April 2021)

• Record Type: Journal Article
• Authors: Waddell, K.; Matua, M.; Bidwell, C.; Atwine, R.; Onyango, J.; Picton, S.V.; Simmons, I.; Stahlschmidt, J.; Johnston, W.T.; Newton, R.
• Is Part Of: Cancer epidemiology. Volume 71(2021)Part B
• Publication Date: 2021-04
• Subjects: Retinoblastoma -- Survival -- Limited resources -- Chemoreduction -- Vision conserved -- Late presentation; Cancer -- Epidemiology -- Periodicals; Cancer -- Prevention -- Periodicals; Cancer -- Diagnosis -- Periodicals; Carcinogenesis -- Periodicals; 616.994005
• DOI: 10.1016/j.canep.2020.101777
• Languages: English
• ISSNs: 1877-7821

Abstract

Highlights: In Uganda, five-year survival of children with RB was 60% with 88% survival achieved among children with Stage 1 disease. Late presentation is a major barrier to overcome, needing change in community perceptions. Very low incidence of treatment abandonment was recorded. Conservation of normal central vision in bilateral RB can be achieved for many children. Successful care of RB patients can be delivered outside of university oncology units. Abstract: Background: Survival of children with cancer in resource-limited regions is very poor compared to better-resourced regions. Retinoblastoma (RB) is a childhood cancer that is commonly reported in many regions of Africa. RB may be safely and effectively treated by non-specialists, which could facilitate more widespread availability of treatment in under-resourced areas. Methods: A ten-year consecutive series of children with RB treated at Ruharo Eye Centre between December 2009 and November 2019 was prospectively followed up. Chemoreduction followed by surgery is the standard approach to therapy. Costs of therapy and also of travel and food are borne by the program which is unaffordable to most families and necessitates donors. Survival by stage of RB and number of eyes affected was described using Kaplan-Meier plots. Visual acuity was assessed for all children with bilateral disease and the retention of sight during follow-up assessed. Results: Among 665 children with RB, 18.2 % (121 children) presented with metastatic (Stage 4) RB with only two of these children surviving >24 months. Five-year survival was 60.2 % among all children with RB rising to 93.3 % and 87.2 % for children with unilateral and bilateral Stage 1 disease, respectively. Among 184 children with bilateral disease, 130 (70.7 %) retained some level of sight following primary treatment with 91 of those (49.5 % of all bilateral children) retaining vision up to their death or to the end of follow-up. Conclusion: Many children in Uganda present with advanced RB and curative treatment is not possible in this setting. Children diagnosed and treated early have good prospects of survival. Retention of sight among many bilaterally affected children is achievable, facilitating access to normal education. Therefore, the strategic priorities for improving survival are changing community perceptions so that children with eye problems are brought without delay, and widening access to modern treatment by using genereal health workers with standard drugs, backed by financial, social and peer support.