Retinoblastoma is the most prevalent and deadly eye cancer that affects children worldwide, and early detection and treatment are vital to preventing death or the loss of an eye.

According to a recent study published in The Lancet Global Health, children with the eye cancer retinoblastoma in low-income countries had a 16 times greater risk of dying at any time within three years of diagnosis than children in high-income nations.

Retinoblastoma is the most prevalent type of childhood eye cancer, and the study conducted by the International Centre for Eye Health (ICEH) at the London School of Hygiene & Tropical Medicine (LSHTM), found significant differences in children’s survival rates between high-income and low-income nations.

Retinoblastoma is the most prevalent and fatal form of childhood eye cancer, and early detection and treatment are essential for preventing death or the loss of an eye.

This danger has decreased considerably in high-income nations over the previous few decades, with death now rare thanks to effective diagnosis and treatment approaches, including specialist retinoblastoma centers.

The study, which examined survival data for 4,064 children with retinoblastoma from 149 countries (categorized as high, upper-middle, lower-middle, and low-income) globally, is the largest and most geographically extensive study on retinoblastoma to date. This is thought to be half of all new cases around the world in 2017.

The researchers examined the three-year survival rate for these children after their diagnosis and discovered that more than two-fifths (40%) of children die within three years of diagnosis in low-income nations, compared to fewer than one in 100 (1%) in high-income countries.

“This is a shocking result – highlighting the inequalities between high- and low-income countries for this disease,” says Professor Matthew Burton, Director of the ICEH at LSHTM. 

“We cannot accept children having such a high risk of death in low-income settings from a disease that elsewhere is viewed as curable. We need to ensure that the reasons for this disparity are ascertained and policies enacted that close this survival gap.”

Even while the study revealed that the main retinoblastoma treatments—eye removal, or enucleation, and intravenous chemotherapy—were accessible in all nations, a number of variables may be to blame for the lower survival rate.

According to earlier research, low-income nations are less likely to have specialized treatment facilities with cutting-edge technology like MRI machines and targeted chemotherapy.

Limited public and health-care professional awareness, as well as access challenges due to travel distance and expense, are all thought to contribute to poorer results and an increased risk of death.

“We have always known there was a difference in outcomes between higher and lower income countries, but the differences we’re seeing in this study, the largest of its kind, are very worrying for children affected by retinoblastoma,” adds Dr. Ido Didi Fabian, lead author and Principal Investigator of the Global Retinoblastoma Study Group at LSHTM.

“Better awareness of the early signs, improving access to timely diagnosis, and implementing existing guidelines aimed at children in low- and middle-income countries, are critical to improving retinoblastoma outcomes worldwide.”

The Retinoblastoma Network (Rb-NET), which was sponsored by ICEH, enabled 260 retinoblastoma centers around the world to share data for the study.

This collective data sharing could lead to a live clinical data repository, thereby enhancing the evidence-based recommendations for the condition’s management.

Despite the fact that retinoblastoma patients in regions like North America, Europe, and Oceania account for less than 10% of all cases worldwide, the majority of the available data for the disease comes from high-income nations.

The authors point out that additional study in low-income nations is required to pinpoint the root causes of this gap on a worldwide scale and enhance results.

The authors acknowledge the study’s limitations, notably the fact that the cohort was drawn from a previous study (despite containing half of all cases worldwide for that year).

Additionally, the study did not gather comprehensive information on the course of treatment, such as precise treatment procedures and side effects. These sub-analyses could be used in further investigations.

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