Prof Clare Gilbert
My name is Professor Clare Gilbert and I Co-Direct the International Centre for Eye Health which is based at the London School of Hygiene and Tropical Medicine.
The first paper I want to talk about is actually a book chapter, in a book that I read in preparation for the final FRCS exam and it was about vitamin A deficiency and the author was someone called Venkataswamy who I had never heard about, and this was a condition that was completely new to me, I knew nothing about it, but I was absolutely fascinated, and it resonated with my wanting to somehow be involved in international eye health, largely as a result of the stories that I heard about India and Africa from my mother who was an army nurse during the war and also from my father who worked in Tanzania immediately after the war in their colonial office, so I had been exposed to health care in low and middle income countries and so this is what I intended to do from quite an early age, so this book really resonated with that, and I was fortunate enough that in the FRCS exam there was an exam question on the vitamin deficiencies in the eye, so I expect I was the only person who wrote in depth about Keratomalacia.
The second publication, is also a document rather than a peer reviewed paper, and this was the WHO report, of the very first workshop on blindness in children and this reviewed all the available evidence on the epidemiology of the blindness in children and the strategies that needed to be adopted. At that time there was very little evidence available, and Allen Foster who I had met at the time of the FRCS exam was at this meeting and he subsequently told me about it, and it was his idea that a post be created at the International centre for eye health for someone to investigate the epidemiology of blindness in children and how it could be controlled, and he asked me if I wanted to do this job, so I left my clinical world behind and joined the International Centre for Eye Health.
The third paper arose out of working with the prevention of blindness programme at the World Health Organisation, because the very first piece of work that needed to be done on blindness in children was to come up with a classification system, and this is very important because it means that data can subsequently be compared and pulled from lots of different studies around the world, and so I worked with the team at WHO to develop this classification system and this is the paper that arose out of that meeting. This really was my first introduction to epidemiology and the importance of defining conditions in a way that you can measure and document. Having developed the classification system or during its development I should say, I visited schools for the blind throughout Latin America, Africa and Asia, to test the system to see whether it worked and see whether there were any gaps, whether you could train other people to use it readily, whether the definitions could be applied and in the process I examined thousands of children in all these different countries and analysed the data and realised from that the causes of blindness varied widely in different parts of the world, depending on their levels of socio-economic development.
One of the findings was that Retinopathy of Prematurity, was the commonest avoidable cause of blindness in children in Latin America, now this came as a complete surprise to me, because at that time in the early 1990s, everybody viewed ROP as a disaster of the past, that had come about as a result of giving preterm babies too much oxygen and since oxygen management had improved, ROP at that time was not considered really a public health problem, and here we were in Latin America where around a quarter, if you pull the data, around a quarter of the children examined in Latin America were blind from ROP and these findings were published in a paper in The Lancet and that paper has really been rather important because it was read very widely by the people who needed to know about Retinopathy of Prematurity which is paediatricians, neonatologists as well as ophthalmologists and it’s helped to open the door for a lot of subsequent work.
Again coming back to the WHO workshop report, they said, the report said there was very little data on the prevalence of blindness in children, so that’s the proportion of children in the population who are blind as well as the causes and I worked with Dr Muhit from Bangladesh and he did a PhD with me, and during this PhD he developed and refined the Key Informant Method for identifying children who are blind in the community and this involves identifying important people in community who know families or they know the children through their role, they may be NGO workers involved in maternal child health, they may be school teachers, they may be other NGO workers or community leaders, and these people are gathered together for a one day training on what it means for a child for them to be blind, how to identify children who are blind and then after their training they go back to their communities and they can use a variety of methods to identify children by making announcements in the mosque or in their village meetings, or going to the market place and talking to other head teachers, and then making a list of all the children who they thought are blind and then they’re all bought to a central location where a clinical team goes to exam them, and Dr Muhit did this across the country, and also identified all the children in all the schools for the blind across the country, and as a result of that he was able to estimate the prevalence of blindness in children at around seven per ten thousand. On the basis of that was able to estimate that in Bangladesh there were 40,000 children who were blind at that time, and then to go with that the causes data showed that around a third of children were blind from un-operated cataract. Again this was a surprising finding because of earlier studies and we had anticipated that vitamin A deficiency would be the commonest cause. As a result of those findings, Dr Muhit made a presentation to Sightsavers at a workshop on blindness in children and they agreed to support a campaign in Bangladesh which was to identify 90% of those 40,000 blind children and to build the capacity of tertiary level services in the country, because these were really at a bare minimum, with really only one or two centres across the whole country for a population of one-hundred and forty million at the time and only one trained paediatric ophthalmologist. Now I thought this was wildly ambitious, but they did identify about 35,000 blind children by using the Key Informant Method by going to schools and rehabilitation centres, and house to house surveys – a variety of approaches. Over the four years they built the capacity of eight tertiary eye care centres and what was completely remarkable was that they operated on 24,500 eyes of children with cataract. I think that last research project really demonstrates how the findings of research if used in advocacy can result in program development.