Improving the control of blindness in children in low- and middle-income countries through programmes, policy and legislation

Retinopathy of prematurity (ROP), an eye disorder affecting premature babies, is a major cause of blindness in children in middle-income countries.

Retinopathy of prematurity (ROP), an eye disorder affecting premature babies, is a major cause of blindness in children in middle-income countries. The School’s research has helped identify which children are most at risk and led to improvements in treatment and care, ensuring the preservation of the sight of thousands of children.

Clare Gilbert, professor of international eye health, has led the School’s research in this area and in 1993 worked with the World Health Organization to develop the first classification system for blindness in children. She carried out initial research in schools for the blind in Latin America, Eastern Europe, Africa and Asia and demonstrated for the first time in 1997 that ROP was an important cause of avoidable blindness in children in middle-income countries.

A large prospective study in seven neonatal units in Rio de Janeiro, Brazil, highlighted weaknesses in staffing, technology, leadership, governance and information management. For example, nursing assistants without formal training carried out most of the care.

The Rio screening programme was a great success. Some 1444 children most at risk of ROP were examined, 118 of whom were treated, with the disease regressing completely in all but five children. Without treatment at least a quarter would have become blind. The study also supported earlier research that bigger, more mature infants are more likely to develop ROP, informing screening criteria.

Gilbert has been tireless in raising awareness of the condition and has conducted workshops attended by ophthalmologists, neonatologists and neonatal nurses throughout Latin America and Eastern Europe. She has also presented to Ministries of Health and non-governmental organisations such as Sightsavers. The research also showed that poor neonatal care was linked to ROP, with a 2012 study in Argentina showing that better control of oxygen reduced the risk of severe ROP. An analysis of 32 neonatal units in Mexico also showed a lack of awareness among nurses about ROP and poor nursing practices.

There has been a rapid expansion of ROP prevention programmes in many middle-income countries. In Rio de Janeiro, for example, nearly all preterm babies are admitted to neonatal units where there is a screening programme, compared to just 40% in 2002.

There has been a similar expansion of programs for ROP in many countries in Latin America, such as Peru anddata from Argentina shows there has been a dramatic reduction in blindness from ROP, with far fewer children being admitted to schools for the blind than 10 years ago when almost 40% of blindness was due to ROP.

Data provided by Gilbert, together with advocacy by committed individuals, has led to a lasting legacy. For example, control of blindness from ROP has been prioritized by the Pan American Health Organization, many countries in Latin America and elsewhere have developed national guidelines for screening and treatment, and some have introduced legislation which mandate eye examination of preterm infants for ROP.