Blindness in Children: The Global Perspective – Professor Clare Gilbert

ladies and gentlemen good evening it’s a great pleasure tonight to welcome professor Claire Gilbert who’s going to talk to us about blindness and children in particular the global perspective now myself I work with adults and I don’t do any pediatrics at all but when I work in developing economies and in towns which have problems of developing populations such as Madras Bombay Jamaica and in Africa and Liverpool it’s very striking that even as an adult ophthalmologist you still have to deal a lot with children and there are epic sand different causes of children growing blind it’s a really important subject because there is a lifetime burden of blindness which is not only tragic for the people concerned it’s absolutely desperately tragic for the economies that have to deal with these people who are no longer going to be productive but are going to be dependent Claire is a wonderful speaker and is an expert in this field I met her when she had just discovered a whole school of people who are blind from retinopathy of prematurity in Chile and I’m going to now turn of different cops who will introduce our speaker for tonight thank you very much um it’s a great pleasure to introduce the speaker tonight especially if she came from the London School of Hygiene and Tropical Medicine where she’s professor in natural eye health I’m the other details from the board there really saved me a lot of trouble she’s co-director of international centre by health and and he’s a clinical consultant and with sight savers and her world interests are in fact in blinds and children and particularly her work has taken her to Bangladesh and also to South America but today she’s going to give us a much broader outlook on blindness in children and the title is blindness and children a global perspective good evening everyone and it gives me enormous pleasure to be here and I’d like to thank the organizers very much for the invitation as has been said my one of my research interest is blindness in children but at the international center for eye health we also do other research which I won’t to tell you about this time does not permit and what I was an overview of what I will tell you about first of all I’ll tell you a little bit about the organization where I work so you have a feeling for the context and the contacts that we have I’ll then tell you a little bit about some of the challenges of doing research in developing countries and highlights some of the extra challenges are doing research into blindness in children and then I’ll tell you what we know about blindness and children how many children are affected and what the causes are and then I shall finish off by telling you about two bits of research that I’ve been involved with working with colleagues in and from Brazil and Bangladesh and two diseases in particular one is retinopathy of prematurity and the other is cataract in children in Bangladesh so you may be a little bit surprised because I expect you’ve all heard that cataract can affect adults and is a very important cause of visual impairment and blindness in developing countries but it is also affects children so the international center for eye health we’re 30 years old this year and we’re based at the London School of Hygiene and Tropical Medicine where we moved just eight years ago and I must they were very happy in our new home because we’re surrounded by people who are like-minded and have a public health approach to the control of diseases so our mission is research and education to improve eye health and eliminate avoidable visual impairment and blindness with a focus on low-income populations we’ve been a wh 0 collaborating centre since we were established and the international center for eye health is our wh 0 collaborating centre name and to fulfill our mission we have these three main areas of activity firstly research secondly education and then making sure that we disseminate the findings from our research to people who need to know it so the different types of research that we are involved with are broadly the different types of research that you need to get the evidence to address diseases and their control in populations so we do a peel epidemiological research and I’ll tell

you what the definition of that all is in a moment operational research which is when you know what to do but you’re not quite sure of what’s the most effective and the cost effective way of delivering an intervention health systems research is seeing how a health system can work to be more equitable and more effective health economics is to do with with costing and what’s the most cost effective way of delivering an intervention and qualitative research is a bit different this is finding out about perceptions and understanding and knowledge so that you can tailor health education programs for people starting at the point of what they already know and do so we try and do all these different elements of research so that we have a broad overview and a broad range of evidence and tools at our command we can bring to the control of I diseases this is a map of where in the world we are currently doing research or where we have done research and much is in Latin America which is where I have done quite a few studies with colleagues in terms of education we run a master’s in community I health and we also have a diploma and this map shows you where our students have come from and most of them come from developing countries mainly in Africa and in Asia and also under are heading of education we produce a journal of community I health this goes out free of charge four times a year and we now have over 35,000 people on our readership database and these are the different languages that we now distribute we produce the English version in London working often with past students and we have a circulation of 20,000 and then this edition is translated into these different languages that you see here for distribution to francophone African countries and to the lucifer and african countries which are the ones that are really the most deprived of educational materials and this shows you the map of the distribution of where our readers are located most of them are I doctors or I nurses some are managers and others are other healthcare professionals as a group we have very close collaboration not only with other groups within the London School but also external to the school and as Frank has already mentioned I’m a clinical consultant to sight savers which is the UK organization that supports prevention of blindness activities mainly in Asia engine Africa but three other members of staff are also closely affiliated with other international NGOs and this keeps us rooted in reality because we go and visit their programs we give advice we visit the hospitals that they work in we meet patients and we see the communities that they are working in and so this contact and close working with these organisations helps us to respond to the needs for evidence and the need for education so that we can very much respond to the needs on the ground and as I already mentioned we are a double richer collaborating centre so we work closely with wh 0 and try and fulfill the evidence the gaps that they have identified and we also work with the International Agency for the prevention of blindness which is an umbrella organization of all the NGOs and all the professional bodies involved in blindness prevention and the corporate corporates who support I care so all these different organizations all contribute to our education and research agenda and also provided ilysm for dissemination of our results so we have synergies between the different areas that we work in as well as having quite a broad scope of different stakeholders and partners so just to come back to epidemiology and epidemiological research answers the following questions it asks how many people in a population that we’re interested in have the disease that were interested in and they’re two different measures one is prevalence which is a measure of the proportion of people in the population who are affected at a given point in time and the other measure is incidents which is the rate in the population at which people develop the disease that you’re interested in so these are two quite different measures and they’re both useful for different purposes another question epidemiological research addresses is who is most affected by age

group by gender by occupation by where in the population they may live and there’s two reasons for asking this question firstly because we need to know who to target for services and secondly it be quite can be quite useful for generating hypotheses about what might be causing a condition if only a certain subset of the population are affected another range of study designs address the question why do people have the condition and then there’s another huge body of research that is done to investigate what can be done to prevent or to treat the condition and here the gold standard is randomized double-blind clinical trials and so just to tell you move on now to talk a little bit about epidemiology of blindness in children and this is dr. fatima chiari who is currently doing a PhD with me in nigeria and she is examining one of the children who was a participant in the national survey of blindness and visual impairment that we recently completed in Nigeria she’s a past graduate so this shows you how r our students can also take part in research first of all I want to talk about some of the challenges of doing epidemiological research or any kind of research for that matter in developing countries much of the data that we have about disease frequency and who is affected and what treatments they are receiving comes through routinely collected data through our information systems within the National Health Service but unfortunately outside the industrialized world health systems are weak and systems for collecting routine data are also not in place and this means that there is a whole potential source of data for research that is not available to us this means that we have to go to the population to find the data that we need which makes data collection more complex and more expensive in the UK we only have one service provider the National Health Service but in many other countries particularly in Latin America there’s a plethora of different service providers who all have different ways of doing things and here again this adds to the complexity of trying to collect data in a standardized manner in much of Africa and the developing world sub speciality of samala g is not in place and people are trained as general ophthalmologists so if we’re wanting to do research into blindness in children for example there are very few or there have been very few ophthalmologists who have the relevant skills and expertise to be able to examine children and give a confident diagnosis given the huge need for delivery of services is often not a research culture and their the lack of research institutions and people who have been trained but this is something that the World Health Organization is really trying to address at the moment and we are hoping that our MSC students can also contribute to this building of a capacity for research and then one also has to consider that we who are interested in eyes and blindness are in competition with other funding agency and other researchers who may be more interested in diseases which caused people to die such as HIV and AIDS and TB so the challenges are considerable and let me come to talk about blindness in children there are some other things that make life a bit difficult and this is because children don’t complain in fact a child can be almost completely blind and they won’t complain that they can’t see and this is because they don’t know any different and they don’t know that other children can see differently from them and this means that you have to be more proactive and also take notice of what parents might say and what they have observed about a child’s behavior children don’t like to be examined although I must say in my experience examining children in developing countries is it is a far sight easier than examining children in the UK communication is difficult so if you’re trying to they asked them to measure their vision trying to get them to understand what you are asking them to do is also difficult and this means that standard methods can’t be used and in terms of blindness it’s rare was relatively rare and this means that we have to have large studies so this may all sound like an excuse but it’s a backdrop to an important backdrop to so you understand the difficulties in obtaining some of this information so what this means is we have to be creative and we have to take opportunities as they arise which may

mean that we put blindness in children or blindness in two studies that are being done for other purposes and what I’m going to tell you about in a moment is the key informant method which is a novel method which was refined and developed by one of my PhD students in Bangladesh and this is proving a very useful approach to the study of unusual diseases in populations in terms of information on the causes of blindness in children much of the early work was done by examining children who are enrolled in schools for the blind and in the photograph you see a photograph of me some years ago it has to be said measuring the vision in children in a school in uganda you can also examine children who are identified through community-based rehabilitation programs and again the key informant method can be very useful in providing information on the causes of blindness in children so whenever we do epidemiology we have to start off with definitions so that you know exactly what it is you’re trying to measure in the population and these are the definitions that you used for the epidemiology of blindness in children so we are using the definition of childhood of nought to 15 years and blindness is defined as less than 3 over 60 in the better I and I will explain what I mean by that now you’re all going to be familiar with these visual acuity or vision testing charts the one that we normally see in the UK is the one whether the letters here but for measuring acuity in populations who are not literate we have to use other symbols or letters so for the seas you ask the person to identify where the opening is in the sea or for the ease you ask them to point in the direction that the ease are pointing as the different letters are indicated so it’s usual to test the vision at 6 meters and but blindness is defined as 3 over 60 and what this means is that the person cannot see the big letter when they’re tested at 3 meters so this is quite in there better I so this is quite a profound level of visual loss when we’re thinking about measurable vision in children we can only use the letter chart on children who go to school over the age of 10 there’s only about that age that they are going to know the letters for the sea and the ease children can only kind of get their hands to coordinate properly if they are five years and above so this means that we’re a bit stuck for measuring vision in children who are yet less than five years of age and so we have to use other testing methods some with symbols and matching tests and these paddles with stripes on I haven’t got time to explain exactly how they work but there are different methods that we need to use for children and we also sometimes have to use toys and which means having a very messy clinic and not being frightened to make a complete idiot of yourself as well so this ophthalmologist here is rasiya ng how this charge is responding to the face of the child as he moves it about above above his face the child can see then she will fix and follow the face of the toy so what do we know about the epidemiology of blindness in children this graph here shows you the all the available data that has been published since 1990 so this is 20 years of different studies where we’ve been able to extract information on the prevalence of blindness in children and just recall that the prevalence is a proportion of people in the population who are affected and because blindness and children is quite rare we measure the prevalence per thousand children rather than as a percentage each of these spots represents data from a different study and and the data have been plotted against under 5 mortality rates which are also per thousand children and with the eye of faith what one could see is that in countries that have got very low under 5 mortality rates so that says the spots on the left the prevalence of blindness is also low countries that have got higher under 5 mortality rates the prevalence of blindness is higher and we are now using under 5 mortality rates as a proxy for blindness in children so for all the countries that do not have data we can use under fight there under 5 mortality rate to estimate

what the prevalence of blindness in children might be and you may think well why do that and this is because blindness and children and child mortality have got very similar determinants they’re both related to poverty and they’re both related to having uneducated mothers they’re both related to poor nutrition poor infrastructure poor health services and poor access to specific interventions that not only prevent mortality but which also prevent blindness and the two important diseases of childhood which not only cause children to die but which also cause them to become blind are measles and vitamin A deficiency and not over the last 15 years there have been enormous programs to control these two conditions through WH o with support from the major UN agencies and in most countries of the world now have reached their target of at least eighty percent of children under the age of five immunized against measles and fortunately the vitamin A can be given at the same time as the measles immunization which means that they can get two major life-saving interventions at the same time and this is also having the impact of reducing corneal scarring in children from vitamin A deficiency or measles which is why the little girl in the picture is blind she’s got this white scarring of the cornea which is the cornea is the front of the eye and since the early 1990s between under 5 mortality rates have also been used as a proxy indicator to determine whether vitamin A deficiency is a public health problem so we feel that there are other groups who are now also realizing the value and importance of using under 5 mortality rates this is a graph in 1999 to show the estimated prevalence of blindness in children in different countries in the world and the green countries of those with a very low prevalence around point 3 2.4 per thousand and as one might anticipate Africa is the region with the highest under-five mortality rates and so the highest estimated blindness prevalence in children but as we probably all know under 5 mortality rates have been dropping more rapidly in some regions of the world than in others and if you look at the distribution in 1960 on the left you see that they are quite widely distributed but if you now look in 2005 on the right sub-saharan Africa is trailing behind and the before the rate of fall in under 5 mortality rates in sub-saharan Africa is not the same as in other regions and this is reflected in this map here which if we’re using under 5 mortality rates to indicate the likely prevalence of blindness what we see is a match of the world that was orange and yellows now become green but countries in Africa are still likely to have a high under-five mortality rate I shall come back to this in a moment when I talk to you about Bangladesh so we’ve used this data from 19 proxy x2 estimates from 1999 and 2010 to estimate the number of children in the world who are blind and in 1999 we estimated it was 1.4 million and there’s been a ten percent reduction and until the year twenty 20 all regions of the world we we reckon have had a decline in the number of children who are blind apart from sub-saharan Africa which are the columns on the right and this reflects not only stagnation of decline in under 5 mortality rates but also the only region in the world where the number of children is continuing to grow Dismas point out that these regions are using the World Bank of designation with the countries on the left and the former socialist economies and the established market economies on the Left being the most affluent then latin america and caribbean then the middle east crescent oai is other Asia and Island so that’s Philippines Indonesia Bangladesh and sub-saharan Africa on the right so moving on now to think about the causes of blindness in children and we worked with wh 0 to develop a new way of classifying the causes of blindness in children in 1993 and this was adopted by the World Health Organization and now nearly all the studies that are published are using the system which is

great because it means that the data can be compared between the different studies and we use two different ways of classifying the causes one is a simple descriptive way which just describes where in the eye or the visual pathways the major problem lies and the second uses the time of onset of the condition that led to blindness and it’s useful to have both because when you examine a child you can always say we’re in the visual pathway the pathology lies but you cannot always say what the underlying cause was so a little bit of an atomy for you this is the parts of the I showing the cornea which is the transparent clear front window of the eye here this is the lens of the eye which is normally transparent and completely clear and when it’s when the lens becomes opaque that you develop a cataract the retina is the thin neurological tissue that lines the back of the eye and which converts the light energy into the electrical impulse which goes up the optic nerve to the visual cortex in the brain so this classification uses where in the eye the major problem lies the second classification the time of onset uses a life-course approach which has been developed by pediatricians and they talk about these different time periods at which you may need to intervene to control diseases in children and exactly the same applies or blindness in in children because during adolescence we may want to detect mothers and their husbands who have genetic disease during pregnancy there are infections that can go across the placenta and damage the developing baby and there are also genes that are responsible for controlling how the I develops and grows if there is obstructed labor then this can cause brain damage which can give rise to damage to the brain and a visual loss in that way newborn babies they can develop conjunctivitis of the newborn which is when the baby contracts infection from the birth canal and if the mother has got an gonococcal infection then the baby can acquire gonococcal infection in the eye which can be absolutely devastating and blinding and if the baby is born premature then they can develop retinopathy of prematurity and I’m going to tell you a little bit more about that in the moment and then the child can be born completely healthy that can develop a disease or condition of childhood which can cause them to become blind and in developing countries certainly measles and vitamin A deficiency have been the most important as have the use of traditional I medicines which is tem and I’ll mention that a bit more again in a moment so blindness in children is complex there are lots of different causes and there are a range of interventions and strategies that are needed for full control which can extend from the community for prevention white through to the need for very sophisticated surgical services at the tertiary level of delivery so what do we know about the causes of blindness and children we’ve now got data on over 32,000 children from 43 countries I didn’t examine them all there now many colleagues who have been using the wh 0 method to record the data and what this is shown is marked variation in the major causes of blindness in children this little crocodile of children I saw at a school in Thailand where a lot of them lot of these little children were blind from retinopathy of prematurity and I just want to point out one thing is that children who are congenitally blind they don’t know that there’s a world out there so they walk around with their head down because it doesn’t actually make any difference if they have their head down or their head up and this is one of the things that early rehabilitation of children emphasizes is to try and make sure they have a normal posture and a normal effect so that they aren’t so they can not appear quite so different to their sighted peers in affluent countries if we were to take a population of 10 million around twenty percent of that population would be children so that’s about two million children in a population of 10 million and if we use that under-five mortality rate to estimate the prevalence then around point three in every thousand or three in every 10,000 children will be

blind so if we multiply the point three per thousand by the two million we come up with a figure of 600 blind children in a population of London of over 10 million so in say London and we know from the data that we have collected that most of the children in industrialized countries are blind from disorders of the retina the lens and the brain and here this would come under others in middle-income countries the demographic distribution is a bit different and around thirty percent of the population will be children the under-five mortality rates are going to be a bit higher maybe point six per thousand and so instead of six hundred blind children in a population of 10 million there’ll be 1800 and in middle-income countries this is where retinopathy of prematurity is now becoming an important cause of avoidable blindness in children in poor countries there may be three thousand six hundred blind children and in these countries measles immunization may not be a complete and vitamin A deficiency may still be a problem and so around twenty percent of children are still blind from score scarring of the cornea as shown in the photograph on the right and glaucoma which can also affect children and cataract is not adequately managed either because children are not found or because they have the operations very late and their sights can’t be saved in the very poor countries mainly in Africa where the prevalence of blindness can be 1.2 per thousand or even higher there may be ten times as many blind children in a ten million population as in industrialized countries and here corneal blindness or the causes of corneal blindness are not being controlled and up to half of children can be blind from conditions which cause scarring of the cornea the photograph on the right is unfortunately of a little girl who i saw when i was in sierra leone and she had had very simple conjunctivitis a viral form of conjunctivitis probably which would have got better on its own without any treatment but she used a local remedy which was to use urine and she had used urine from her uncle which unfortunately was infected with he’d got gonorrhea I was affected with gonococcus so this little girl was blinded as a result of the use of that traditional remedy you find people use traditional remedies when as a last resort and it usually means that there aren’t I care providers and services available and people try and do what they can to treat or to prevent disease so if we put all this information together the number of blind children / 10 million population by calls and level of development we come up with this schema and what it shows is that in high-income countries a relatively high proportion of children are blind from conditions that you can’t do anything about so in a population of 10 million if you remember there may be 600 who are blind but to them will be blind from conditions that you can’t do very much about whereas in very low income countries we still have more preventable causes which we can do something about and dis schema is proving very useful for countries to come up with a rough estimate of not only what they think the number of children who are blind are in their population but to also have a rough idea of what the major causes are likely to be so if we’re thinking about the avoidable causes these are the ones that are the highlighted in yellow blue and green so the preventable ones are the corneal diseases the treatable causes are cataract and glaucoma and the retinopathy of prematurity is both preventable and treatable as I will explain in a moment so overall over forty percent of children in the world are needlessly blind and most of the children who have avoidable blindness live in Africa and in Asia um as has already been mentioned blindness can have a major impact not only on the char but also on their family and on their community and I’ve alluded to the fact that children who are born blind have great difficulty in learning how to to behave in a way that is normal but you can also have profound effect on their development not only their physical development but also their social and emotional development and this is because it said that seventy-five

percent of what we learn when we’re small babies comes through vision and I think all of us are very aware that when we meet babies they really watch and follow what’s going on and they copy and they respond to their visual environment so if a child is blind then that opportunity for learning is cut off from them so this is why one of the reasons why it’s very important to try and identify children who are blind early to give them the treatment they need not only to restore their their site but also to try and overcome this developmental delay provision for schooling for children who are blind is woefully inadequate throughout the world but particularly in developing countries where proximately only ten percent of children who are blind receive any kind of education so this will have a lifelong impact on their career opportunities as well having a disabled charge in the family can cause enormous pressure and strain and can lead to strained relationships and even family breakdown and there’s all the economic costs not only because the child will not be able to go on an an income but also the loss of the earnings of a parent who has to give up their time to care for a child so the consequences of disability and blindness are enormous and extend well beyond the individual child so what’s being done about it and I’m pleased to say that in 1999 the World Health Organization and the International Agency for the prevention of blindness launched a global initiative for the elimination of voidable blindness by the year twenty twenty and blindness in children is one of the five priorities for control and this is a document that outlines the different strategies that countries can use I just want to talk to you now about how researchers strengthened probam programs and influence policy within this vision 2020 initiative and i’ll talk about retinopathy of prematurity in Brazil and Latin America and cataract in Bangladesh these are two very well-known people who were blind from retinopathy of prematurity Stevie Wonder and David Blunkett and this was a condition which was thought to have been a disaster of the past and because it was associated with giving premature babies too much oxygen as soon as people realized that they stopped giving oxygen to babies and people thought this is the end of that as a blinding eye disease basically retinopathy of prematurity only affects premature babies and it’s got very clearly defined stages which if not treated in time go give rise to a retinal detachment which is impossible to treat so the key to retinopathy of prematurity is prevention and detecting it in time to treat it now when I was examining children in Chile and what I found to my great surprise and also to the spires of the ophthalmologist who were working with me was that nearly twenty percent of children who we examined were blind from retinopathy of prematurity no one had any idea that this was the case and then this led on to other studies in other countries in Latin America and around the world and we estimate that in Latin America there are 25,000 children who were blind from retinopathy of prematurity and a further thirty thousand to a blind in Eastern Europe and Asian cities so what are the risk factors for retinopathy of prematurity was a bit like buying a house location location location it’s prematurity prematurity prematurity so the more preterm the baby the more likely they are to suffer from this condition but oxygen is still playing a role and inadequately controlled oxygen is still as a risk factor as is infection and failure to gain weight and inadequate services including nurses who don’t know what they can do to prevent the disease so prevention can come through these different strategies here but the two I want to highlight or excellently innate or care and the role of eye doctors in examining babies and treating those who have got the advanced stages of the disease and in Latin America where afters experience in Latin America this made me ask the question of which babies should be examined for the disease so I ask my colleagues to provide me data for the characteristics of the birth weight and gestational age of the babies that they treated and this is data from Canada US and UK and this is what a full-term baby would be 40 weeks and what you see is these babies are all

extremely Prem ature so only extremely premature babies are developing the severe form of the disease in industrialized countries and our UK screening criteria are based upon that so we only the ophthalmologist only examine babies who are less than 1500 grams an equal to or less than 32 weeks gestational age however this is data provided by colleagues from all these different countries and what we see is a much wider range of birth weights and gestational ages in the babies who are developing the severe form of the disease and this is happening because we’ve got wildly varying levels of care for babies in middle-income countries and this is exemplified in India this is a very sophisticated unit in India where the babies have all the kind of care that you would expect in an industrialized country but most of the babies who are cared for in the government sector are cared for in these kind of units where the care is woefully inadequate so the implications of this study was that if we were to use the UK criteria to other countries we would miss a lot of babies needing treatment and they would go blind and also all those bigger babies they can be prevented the ROP can be prevented with today’s knowledge so this led me to do some research in Rio absolute beautiful city and we did two projects in Rio one was to address which criteria should be used for examination and can we prevent ROP and I would do some work with andrea’s in whose noctem ologist to examined babies in the seven largest units in Rio de Janeiro she examined 4,000 babies and I don’t know if you can see but this is a pen here and this is a footprint of a baby showing you how tiny some of these babies are that are examined for this disease and the findings in a nutshell showed that in the units which had got the better levels of care where the babies were surviving you saw these smaller babies developing the disease but in the units where the care was not so good and the survival rates were lower you had wider range of birth weights and gestational age of babies developing severe disease which means that you need to have different screening criteria involving the bigger babies in some units or the smaller babies in other units if you were to apply just one criteria to all units to make it easy so the ophthalmologists and ninette ologist know what they’re doing this would increase the number of babies to be examined by twenty percent but would only need twelve percent more examinations so the workload to find those extra babies is not as great as one might initially think the points of care study was to address the question as those training nurses and providing equipment helped to prevent our AP and other outcomes of minute of neonatal care and this is a three-year study with a one-year pre-intervention data collection then the nurses were trained and provided with equipment and then after one year we had the follow-up data collection the points of care is so that the nurses know how to control and reduce all these different factors which can increase the risk of bad outcomes including retinopathy of prematurity in preterm babies and just in November we went back to do a preliminary analysis of the data and unfortunately despite all this work we found that there was no change in the rate of ROP in the babies or in other outcomes and this may have been explained by a brain drain of neonatologists and nurses from the units that we were working in because there was a severe shortage of personnel what we were pleased to note was the nurses were actually monitoring the baby’s better after the training than they were before but this didn’t translate into less retinopathy of prematurity so in 1997 and Amira Donahue and I ran the first workshop in Chile at that time no one really knew that ROP was a problem there was very few ophthalmologists you were screening since then they’ve been 30 workshops most countries now have programs their support for training and equipment from the NGOs and there are government policies now in several countries which make examination of preterm babies and essential requirement and it’s only when programs get embedded within ministries of health and government do they increase their coverage and become

sustainable and control of blindness of retinopathy of prematurity is now the second goal of pajo which is the wh 0 for the Latin America region which also will mean that they’ll probably be more resources to controlling ROP in the region things are also happening outside Latin America with these two international congresses which I was fortunate enough to be on the scientific committee for national guidelines have been developed in china as and also just last month in india and eastern europe poses a big challenge for reasons i don’t have to go into this just shows you what this all means in terms of their parents this little boy was a a very precious baby his parents had been in fertile for many years and had had lots of miscarriages and he was identified and treated and I think you can see by the way he’s looking at the camera that he can certainly see after his treatment okay switching continents this is Bangladesh a very very different country indeed and it’s a most densely populated country in the world it’s got 50 million children and I’m just going to briefly tell you about some work done by dr. mu hitch who was another of my PhD students the questions we asked in this study were what how many children are blind why they blind and then what can be done about it and he developed and refined his key informant method which I’ll describe to you and then he applied that to a populations of 100,000 in all 64 districts across the country so it was an tional study and the key informants our community volunteers who are identified and then trained in a one-day training in the different causes of blindness and children what to ask for what to look for after that training they were given two weeks to network in their communities mesilla lower 40 key informants trained for every hundred thousand population so they went back to their communities to identify children who they thought or had had visual problems the families then brought their children to a site where a team of ophthalmologists measured the vision in the children which you can see on the left and examine them to confirm that they were blind and to identify the cause the parents also receive counseling from one of the field workers and children who were blind were referred to and the local hospital and this is a family of three children who are blind from cataract and what he found was among the nearly 2,000 children that he examined he estimated the prevalence to be point 75 per thousand children which is almost exactly spot on what you’d expect if you used under 5 mortality rate as a proxy which was very bleeding and the main cause was an operated cataract affecting almost a third of the children now because of beliefs amongst the parents that congenital blindness cannot be treated eighty-five percent of those children had never seen an eye doctor they were just sitting at home and in their village and as a result of this study we were able to estimate that there are 40,000 children in Bangladesh were blind 12,000 of them were bilateral blind from cataracts which can be treated to restore sight but at that time there was only one surgeon who was trained in pediatrics and there were only three eye hospitals who could manage children two of them were in the capital city and they were only doing three hundred cataract operations throughout the country a year so nowhere near enough to meet the need in the community so a collaborative project was established with sight savers as the main coordinating organization and the target was very ambitious and to find 40,000 blind children where you can see the targets and operate on 10,000 and to establish eight to ten child I care centers and three methods were used for finding children in the community I’m including the key informant method and those other two methods that you can see there I was involved in their planning and the monitoring and also the midterm evaluation and the end of project evaluation in 2010 and going back there it was absolutely wonderful to see that there are now 16 trained pediatric ophthalmologist there are eight tertiary centers well established this probe project had identified nearly 33,000 blind children almost 10,000 with bilateral blind from cataracts and over 24,000 cataract operations have been formed of being performed in children over that six-year period which was really staggering I was really amazed by

what they’ve been able to achieve and this is some of the children who are in one of the I units which had been upgraded and refurbished and new equipment and training for children with cataract and this is what it is what I mean about little girl being very compliant with being examined and this is a key informant with another family of children who she had found who were blind and she’s after they’ve had their surgery and this is yet another family where the mother herself was blind and she’d had two blind children and the father had run away he just couldn’t cope with having a a totally blind family and these two children were found living in a slum in chittagong and they had had cataract surgery and I think you can see by their cheeky faces that they can see me very well as I’m taking their photographs and this is all children who’ve had cataract surgery back in action doing what children do the key informant method is now being used by our group and to investigate other disabilities in children and this is one of the exam Nation camps that you can see for children who’ve got a whole range of other disabilities so what next and I think we need to do policy research for our retinopathy of prematurity in Latin America to see how we can advocate for and to get programs for ROP embedded within ministries of Health we need to evaluate the impact of integrating child I health into government health systems which is what will make them sustainable in the long run and we need to scale up what we already know works I’d like to acknowledge my colleagues and funding agencies the team of fabulous people who have been working with in Latin America between people have been working within the UK at and at the international center for I health thank you