A ten-year study of Retinoblastoma in Uganda: An approach to improving outcome with limited resources

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.

Causes of death and survival analysis for patients with retinoblastoma in Jordan

“…The benefits of building capacity and centralizing care in low-income countries include increasing awareness of the disease and offering ease of access to health care (3,(36)(37)(38). In the low-income countries of Uganda, Senegal, and Nepal, survival rates are 60% (41), 53% (42), and 24% (43), respectively, with metastatic spread reported as the cause of most deaths in all three studies. Survival rates were much higher in developed countries; 99% in the United States (44), 100% in the United Kingdom (45), and 95% in Japan (46); most deaths resulted from trilateral Rb or second malignancies.…”

Locoregional Thermal and Chemical Tumor Ablation: Review of Clinical Applications and Potential Opportunities for Use in Low- and Middle-Income Countries

“…Cryotherapy has been used worldwide to treat both superficial tumors in the cervix, skin, 61 , 62 and eye, 63 and tumors deeper in the body in the kidney, 64 - 66 liver, 67 , 68 lung, 69 , 70 bone, 71 , 72 prostate, 73 , 74 breast, 75 , 76 and head and neck. 77 In LMICs, cryotherapy has been widely implemented in national programs for prevention and control of cervical cancer throughout Asia and Africa, 78 - 84 particularly after endorsement by the WHO in 2013.…”

The Global Retinoblastoma Outcome Study: a prospective, cluster-based analysis of 4064 patients from 149 countries

“…In a single-centre study done in the USA (1994–2014), 4 the retinoblastoma survival rate was reported to reach 99% (mean follow-up 4–8 years, depending on age group); in a single-centre study done in the UK (2002–14), 5 it was reported to reach 100% (mean follow-up 5 years); and in a single-centre study done in Japan (1984–2016), 6 it was reported to reach 95% (10-year overall survival), with most deaths occurring from trilateral retinoblastoma in all three studies. In low-income countries, survival rates are significantly lower: 60% (5-year survival) in a single-centre study done in Uganda (2009–19), 7 53% (follow-up time not indicated) in a single-centre study done in Senegal (2006–10), 8 and 24% (10-year survival) in a single-centre study done in Nepal (1998–2008), 9 with the majority of deaths in all three studies occurring from metastatic spread.…”