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How to set up and manage an effective ROP programme: A case study from India

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Hi GV. So is ROP a public health concern in India Yes, it is an increasing problem in India because of the increasing number of preterm births Every year we have about 25 million births in India, of which about twenty percent are preterm. 10 to 15 000 children develop sight- threatening ROP in India every year and, if you look at the global statistics, is the single largest contributor to preterm births as well as to ROP is India because of the sheer size of the population.
And therefore in a situation where not much was done earlier with an increasing magnitude of preterm births and survivals ROP becomes a real public health concern in India today Now when we look at the special newborn care there are three types of newborn care or intensive care units, the level one is where normal deliveries take place and resuscitation facilities are available and level two is where you have more intensive care for those who are more than 32 weeks gestations.
The most important is the next level which looks at the special needs of newborns So this is a programme which has been initiated in India at the national level which looks at disabilities defects, deficiencies and then providing them support So if a child with ROP needs rehabilitation because they’ve lost sight then this is done at the new programme which is called the early intervention centre and each of these is there at the rate of one per district. In many cases there is an ambulance service which is available so the mother and the child is eligible to be transported by the government ambulance service from one level to the other, based on the location of where the delivery takes place.
Because this is not right across the country but a large number of states have initiated an ambulance service What are the key steps that were undertaken for advocating for ROP and who were the key partners involved? Right, that is very important because without advocacy, there wouldn’t be a programme or a policy in place. It’s important to remember that when we look at ROP advocacy needs to look at the need for a multi-disciplinary team. It cannot be just the ophthalmologist, because the neonatal care is something which the neonatologist and the paediatrician would deal with obstetric care. You need the obstetrician to be in, you need the nursing personnel, and also public health professionals.
And advocacy for an extended team approach is what has been the hallmark of the pilot project that have been undertaken in India. All of them need to be on the same page but at the end of the day it is a healthy surviving ROP=free newborn which is the goal, which all of them can work with. So advocacy plays an important role in trying to get all stakeholders on the same platform to make policies happen, formulate them, and ultimately translate them into programmes. So, what were the key steps that were undertaken to organise ROP services in India? In the pilot project we’ve adopted four states across the country
and these states have been adopted based upon: 1. The interest of the state governments to scale it up, if the pilot project was successful. 2. Availability of ophthalmologists in these states who would be willing to be trained. The third aspect was data in relation to preterm births on the special newborn care units, where these children were being managed, how many children were being managed. Based upon these factors and the availability of a mentoring partner, whether in the government or the NGO sector, to handhold these districts where the initiative was to be planned. In these four states we used a hub and spoke model, the medical school for treatment, and training, and the districts for screening and improvement of neonatal care.
Also, it was realised that we can’t just look at the ophthalmic side of it if we have to make a difference to ROP. Half the budget under the queen’s trust project was therefore allocated for quality improvement in neonatal care. And this quality improvement led to the development of simulation models, mannequins, training material, creating webinars and 10 modules to sensitise people working at the neonatal care facilities on improvement in quality and how they can actually have an improved outcome. Education material to increase awareness amongst mothers.
There was a need to sensitise the staff, in the district level facilities, on the reality of ROP and how they should advise the mothers that they should bring back their children, if they have a newborn who were preterm and then get them followed up. In this very ambitious programme, what were the major challenges that you faced and what were the key achievements that you can share with us? At a place where no dedicated services were available you’re able to bring in a screening service. Over the last four years nearly 15, 000 children were born preterm in these four states, in the districts at which we were working.
Amongst those who were screened and picked up as having ROP, there were about 1500 babies. Out of these 1500, nearly 350 required treatment. Of that 350, nearly 90 percent, that is about 315 babies, came for treatment. So there was a system which was set in place, and the system started working because of an integrated approach and children were screened and those requiring treatment were then provided treatment. So that was a major, major achievement. The other achievement was in terms of advocacy with the central government, so that policies were then then put in place for ROP, which is not there earlier.
This was again a big, big achievement and I think this is a sustainable achievement because all the states where the pilot was undertaken have decided to scale it up and continue the activities. A new programme always comes with challenges. People are not very keen to change their mindset when a new activity comes in they think more is thrust upon them and therefore we had challenges, with ophthalmologists not willing to be trained or come forward for a fellowship initially. We had nursing personnel and paediatricians who thought we were thrusting an additional responsibility on them when they were already busy with their work. Repeated perseverance and patience actually got them on board.
Because initially the governments thought its such a small number and why should we actually spend additional resources on tackling a problem like ROP but then when we mentioned that we would be providing technical support, help in scaling up the infrastructure and the benefits they could then evaluate at the end of the pilot and then take a call on whether it was successful or not, governments agreed. We also ensured that to make it sustainable we would sign agreements between the government health system, the Public Health Foundation of India, which is actually managing the grant to provide support for this and the mentoring partners, so that everybody would work together in making this happen.
Another challenge was the early discharge from a special newborn care unit. As soon as the baby was stabilised, in terms of neonatal health, the child was discharged and the window to screen for ROP was then lost, and that was a challenge. And now we’ve been able to surmount this challenge by working with the district level facilities to see that they have at least one screen before their discharge. So that challenge was also an important challenge to face. We set up parent support groups for children with ROP, who would then support mothers who come in for delivery, with messages on why they should not disregard the eyes as an important component of care.
The motivation to bring back a normal looking child for screening is still a major challenge for treatment. Once they knew that the child had sight-threatening retinopathy and needed treatment, 90 percent of the mothers brought their children back, but in terms of a healthy-looking child being screened for ROP once they are discharged, that again was a major challenge Thank you GV for sharing this experience with us.

In this video on this step, GVS Murthy shares his experience in guiding the pilot ROP programme in India over a period of four years. Based on the success of the pilot India is now in a position to scale up the programme.

As you watch the video, consider the importance of establishing some organisational structures that can connect multiple teams together, support parents and deliver a high quality service. Share your impressions about this programme and your perspectives on the sustainability and scale up for this programme in the Comments.

The following text is adapted from ‘The role of advocacy and communication in reducing ROP in India.’ Comm Eye Health 2018 Vol 31 No. 101, 201.

Low birthweight and prematurity are two major causes of neonatal and infant mortality in India. Nearly 7.5 million low birthweight and 3.5 million preterm infants are born in India every year, making it the country with highest number of preterm births in the world. With the aim of lowering perinatal and neonatal mortality rates, there has been a drive by the Government of India’s National Rural Health Mission, to expand neonatal care facilities. This impetus has been supported by the National Neonatology Forum (NNF), United Nations International Children’s Fund (UNICEF) and other agencies, resulting in the opening of a number of Neonatal Intensive Care Units (NICUs) and more than 800 Special Newborn Care Units (SNCUs).

However, lack of infrastructure, human resources, knowledge and skills have led to variability in the quality of services provided and services for ROP were not included as an activity in SNCUs. These, along with some other contributing factors, led to an increase in the number of children becoming blind from retinopathy of prematurity (ROP).

India accounts for nearly 10% of the global number (32,000) of preterm infants becoming blind or visually impaired from ROP every year. Visual loss from ROP will continue to increase unless neonatal care includes services for the detection and treatment of ROP. This required strong advocacy efforts, communication and collaboration among all the stakeholders (neonatologists, nurses, ophthalmologists, parents, social workers and the government) in the following aspects:

  • High quality neonatal care including availability of equipment and establishment of appropriate care protocols
  • Mandatory ROP screening of babies at risk,
  • Availability of trained ophthalmologists to screen and treat babies with ROP
  • Information for parents to ensure follow up.

The National Programme for Control of Blindness (NCPB) along with non-government organisations such as the Queen Elizabeth Diamond Jubilee Trust, who funded the programme (2013-2019, and the Public Health Foundation of India, who managed the programme, were pivotal in advocacy and communication efforts with the Government of India in formulating national guidelines and policy regarding ROP. A National ROP Task Force was constituted under the NPCB and the Ministry of Health. The Task Force brought together all the relevant professional experts and other stakeholders, who advised on the initial direction of the programme and provided impetus to help bring about change in policy.

The Task Force also monitored the programme, and produced health education materials for parents, a quality improvement package for neonatal staff and a competency framework for training ophthalmologists. An online system for data collection was also developed.

Before funding ended, several of four state governments had committed to scaling up the services to other district SNCUs, and several other states were provided with equipment so they could start a programme too.

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Retinopathy of Prematurity: Practical Approaches to Prevent Blindness

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