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Case study: Establishing an ROP screening programme in Brazil

The experience from Brazil, a huge country which has been through a long process to develop and expand a national ROP programme.
What alerted the neonatologists and the ophthalmologists in Brazil to start or initiate an ROP screening programme? In the early 90s, the neonatal intensive care units were implemented in Brazil, in many big cities. So almost 10 years later ophthalmologists noticed that many, many children were blind due to retinal detachment and they were premature. It was ROP and we went to the neonatologists to talk about this and it took a while. We found a lot of resistance because it was something more to do in the neonatal unit, new professionals, new procedures and and neonatologists and nurses they, they don’t see the children after they are discharged so they they’re not believing that was happening.
We started creating awareness, talking showing pictures, showing videos, explaining the disease, the impact, and children’s and families lives. We defined a team because ROP blindness prevention is all about collaboration. As an ophthalmologist, our expertise is to diagnose and treat but we need the health care team to select the babies, to prepare the babies, to dilate to put the eye drops, to…. not to miss any kid in exam day so, we define a team, we don’t have much time.
Whenever we have a baby to treat we have 48, 72 hours to do that and we have, we need a very well coordinated team, so we spent a lot of time planning and understanding how it would work, and it’s not all the same. At the beginning I work in seven different neonatal units and i can tell you they found different solutions for their own unit. What are the challenges that you’ve faced in implementing ROP screening criteria?
That’s a very good question because even it’s not only at the country level, but even in the city level it’s very clear now that we can’t apply the same screening criteria because risk factors are related obviously to prematurity, but also to the quality, to the level of neonatal care.
In Rio, where we started with a very broad screening criteria less than 37 weeks of gestational age, less than 2 000 grams, and we found that the units that had a better level of care, we could use an error screening criteria less than 32, less than 1500, but the units that were struggling still in many processes of the level of neonatal care they needed a broader screening criteria and this is the same in different countries, in the region, in Latin America, so whenever we’re starting a programme, we should start with a broader screening criteria, learn what who is your population and then after six months, a year, you can tailor your most appropriate Screening criteria.
Those are really valuable lessons to take forward. So what were your key steps and time scales to scale up the ROP screening to a national level? It took us probably five years. So we could have a program in every capital of every single state. So after the awareness we then come and involve all, you know, stakeholders to start planning, involve every one in the planning step because we need to do situation analysis, to define resources needed, because, you know, resources are not everywhere.
We don’t have enough human resources, we don’t have equipment, so we have to start where the bigger neonatal units are a situation, a careful situation analysis is a very important step before the implementation and obviously monitoring the whole process is an ongoing activity, so we are still, still we don’t have 100 percent of the country covered, and we started in the early 2000s. What would be your, sort of, key tips for countries where ROP is become an emerging challenge? In one word, an ROP screening programme, I would say collaboration, awareness and collaboration. First of all we have to start from the awareness.
Obviously you start with the professionals that are in the NICU’s, but we have to plan to start in medical schools and schools for nurses, training those young professionals, also, don’t let them come to practice without knowing. The other thing that is very important is funding. You don’t have a sustainable programme because we’ve started at the beginning. We didn’t have support from the government. We have support to start from NGO’s but a sustainable programme needs continuous funding.
Funding for training ophthalmologists, funding to pay for the ophthalmologists, for, you know, the equipment and all the what is needed and depending on many health care systems that sustainable source is the government We know that the quality of care provided in neonatal units is very important, so how do you go about influencing quality improvement within neonatal units? ROP is an indicator of the level of care.
As ophthalmologists, we just diagnose and treat but the percentage of babies that will develop a severe ROP will depend on the quality of neonatal care so as ophthalmologists we can advocate if you improve your level of care, we will have fewer babies developing severe disease and obviously survival rates will increase we are seeing a lot of small babies now just like in the industrialised countries because the level of care is so good that bigger babies they don’t develop a severe ROP anymore and we are seeing severe forms fewer but severe in the very small babies and we are working together towards improving the level of care Parents are crucial for neonatal care here in Brazil they are recognised as part of the team they are important, they remind nurses when it’s time to do the eye exam they know they are part they help holding their baby because babies feel very comfortable in the presence of their parents babies are discharged they have to come back many times to continue the ROP screening so it’s important, also, because babies sometimes needed glasses and a long-term follow-up and they need to understand what’s going on with their children’s eyes and vision.

In this video ophthalmologist and ROP expert Dr Andrea Zin shares the experience from Brazil, a huge country which has been through a long process to develop and expand its ROP programme.

Brazil ROP progamme: Lessons learned

Extensive advocacy built the momentum to develop ROP programmes in Brazil and screening is now fully integrated into the state and municipal levels of Brazil’s health system. The ophthalmologists are recruited and employed by the health system and receive a regular salary. This means that screening is sustainable and can be expanded to other states and municipal health services. This is a valuable lesson for other countries as, in many settings, few ophthalmologists are willing to screen voluntarily. The only way to expand coverage and provide a sustainable high quality ROP programme is for it to be fully integrated into the health system.
Highly complex projects such as this have multiple elements, partners and activities and require a management team and financial management with expert input from eye care and neonatal care.
Lessons to take on board from Brazil’s ROP programme include:
  • Advocacy initially with the professionals – ophthalmologists, neonatologists and nurse – then bringing in the state level government and the ministry of health which has led to ROP screening services being fully integrated and sustainable.
  • Excellent clinical training and support: High quality ROP screening services require motivated and committed ophthalmologists who have had hands-on, practical clinical training by ophthalmologists with expertise in examining and treating ROP. They also need to be trained in how to set up, run and manage a service, as in this project. The ongoing support, supervision, mentoring and problem solving by the trainers in this project is a model of best practice, maintaining quality as well commitment.
  • Health management information systems for ROP that are integrated into government systems are likely to be used more regularly and have more an impact than stand-alone monitoring systems. This also means that information is used to formulate and update guidelines for screening ROP
  • Financial sustainability requires consideration from the beginning, ideally as an integrated programme within the health system.
  • Leadership: The Brazil ROP programme has benefited significantly from having consistent support from Dr Zin who has championed it from 1998 to date.

As you watch the video, consider what the main takeaway lesson is for you about establishing and managing ROP screening services?

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