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In a few short years, the success of the National Diabetic Retinal Screening Programme (Diabetic RetinaScreen) has meant that more people at risk of blindness are being seen earlier and offered the latest treatments.
People who do not require hospital attendance are being managed in treatment centres around the country, where applicable. This is an approach that Consultant Ophthalmic Surgeon and National Clinical Lead for Diabetic Retinopathy Mr David Keegan would like to see replicated across ophthalmology services in Ireland.
The total number of people living with diabetes (type 1 and type 2) in Ireland is estimated at over 225,000 (Diabetes Ireland). People with diabetes are at risk of a number of diseases, including diabetic retinopathy.
Unlike some diabetes-related complications, however, retinopathy can be asymptomatic and there may be substantial deterioration before it is diagnosed, by which time it may be too late to avert vision loss or blindness. This means it is important to detect retinopathy as early as possible.
Iceland was the first country to screen for diabetic retinopathy back in the 1980s. A screening programme was started by a visionary ophthalmologist, Prof Einear Stefánsson of the Department of Ophthalmology, University of Iceland. Prof Stefánsson set up the programme in response to new research about the epidemiology of the disease.
He showed that Iceland as a small island community was an ideal place to run a screening programme. When the programme showed that prevalence of blindness could be reduced, it became a model for other countries.
Screening programmes for diabetic retinopathy were adopted all over the world, and starting in 2003, the UK set up its own model. This was the model that Ireland followed when it formally established the National Diabetic Retinal Screening Programme four years ago, outlined Mr Keegan.
The work on Ireland’s Diabetic Retinal Screening Programme began in 2008. A framework document was developed with the support of then Minister for Health Dr James Reilly. The programme was set up under the National Cancer Screening Service, now the National Screening Service, and is open to people with diabetes aged from 12 years.
There was an obvious need for the programme and Mr Keegan made it his first priority.
Much work was done on outlining the economic benefits and impact of introducing the programme, Mr Keegan said. The cost of blindness was identified by working with the National Council for the Blind and other experts. “We were able to model-out with a health economist the impact of bringing in the programme,” outlined Mr Keegan.
Mr David Keegan, National Clinical Lead for Diabetic Retinopathy
The first round of screening took place in 2013 and 2014. Every person who was on the diabetic register (patients with a diagnosis of diabetes) was invited for screening.
In the early days, there was a deal of confusion and communication difficulties, said Mr Keegan. Many people gave consent for screening but were not showing up.
“In the second round of screening that improved dramatically because we had our centres up-and-running. People knew they would get their appointments, they wouldn’t be cancelled; they would be seen in a timely manner,” said Mr Keegan.
The third round of screening was completed in 2016.
The programme is run as a public-private partnership. “There are two private companies that do the screening, the photographs and grade the pictures,” explained Mr Keegan. “The patients who need to be seen in the treatment centres are referred in by them.”
According to Mr Keegan, most people will have a normal result. This will mean they have no retinopathy or have early changes to their retina and will be invited back for routine diabetic retinopathy eye-screening.
About 14 per cent of people who underwent screening were referred to specialist centres when the programme began. The figure has since fallen to 9 per cent.
“We are keeping [many] people out in the community and we don’t need to send them into the hospitals,” said Mr Keegan. “We are fine-tuning and making the care of patients more efficient. Those who do need treatment are referred into a treatment centre and they should be seen by an ophthalmologist and then appropriate treatment started at that stage.”
In one sense, the success of the programme has put pressure on hospitals because of referrals, said Mr Keegan. However, the activity-based funding model established as part of the programme means that hospitals are paid based on the number of patients they see.
There are 123 screening locations around the country. The idea is that anyone in Ireland with diabetes, no matter where they live, should not have excessive journeys in order to get screened.
“We have done a piece of research with a group in England which we are really excited about, which mapped out the average transit time for any of our patients — no matter where they live in the country to one of our screening locations — is 19 minutes,” said Mr Keegan.
Pivotal to the success of the programme is the diabetic register, said Mr Keegan. “This is the key trigger point; if a patient is diabetic, they should see that they are on the register… If they are not on the register, they can self-register on the website or they can get their GP or diabetic nurse to put them up on the register,” he said. They can also call 1800 454 555, he added.
The patients must sign a consent form allowing their images to be taken and stored before they attend for screening. “It takes 20-to-30 minutes in total because they need to have their pupils dilated and then they head off home after that,” said Mr Keegan of the screening.
“Those pictures are then assessed and examined by trained graders and they can then tell if someone needs to go back for another photograph in a year, or whether they need to go into one of our treatment centres… ”
Most referrals to a treatment centre are routine and these patients will be seen in 13-to-14 weeks. However, if the referral is deemed urgent, patients will be seen in two-to-four weeks.
The number of people who have taken up the offer to get screened has risen. It now stands at around 60 per cent of patients invited for screening, said Mr Keegan. The target is to reach somewhere between 70-to-80 per cent. This would be a good figure for Ireland due to the existence of private healthcare, whereby many patients would access screening privately.
There remains a degree of resistance among some people to getting screened, said Mr Keegan. More work is being done with a company to analyse the patterns of non-attendance across groups to see whether specific age groups, areas or demographics show greater likelihood of non-attendance for appointments.
The programme would also like to get ‘visibility’ on those people attending private services, so that this can feed into overall figures on diabetic retinopathy screening, said Mr Keegan.
The ‘gold standard’ for peripheral retinopathy is laser treatment and all centres have lasers, said Mr Keegan. For maculopathy, the treatment is laser or injections. There are four different types of injections that can be administered, with some other injection agents coming on-stream, he said.
There are also newer lasers on the horizon that cause less collateral damage in the eye, said Mr Keegan. The programme will be monitoring closely how these new laser technologies develop, but will not bring them into practice until the evidence shows clear benefits, he said.
Another interesting emerging treatment concept is the use of a tablet for patients with early retinopathy, said Mr Keegan. This has been shown to reduce the progression of the disease to the stage of blinding retinopathy.
However, this would require some 20,000 people affected by early retinopathy taking the tablets, he said. This would amount to mass medication, and as with the fluoridation issue, there would be ethical questions raised about whether this should be done. “This is something that we will be discussing at our clinical advisory group in the coming year,” said Mr Keegan. “You would reduce the relative risk, but you have got to balance that against the taking of a tablet every day, and while the side-effect profile for the tablet is very low, I have no doubt people would have their concerns,” he added.
There are also developments happening around IT. It is exciting to now have “full visibility” on a large cohort of patients, right across their treatment pathway and this is powerful for treatment planning, said Mr Keegan. “We can say definitely that people’s outcomes are better because we know what their vision is like coming into the programme and you see what their vision is like at the end of a treatment course. We can report back to the people who make this happen, which are the citizens and taxpayers of the country, that we are having a benefit and impact on patients’ lives.”
The success of the programme can serve as a model for age-related macular degeneration (AMD), cataract and wider ophthalmology services, said Mr Keegan.
“We can move out into the community and can ‘de-stress’ our acute hospitals,” he said. “I would love to get the funding for AMD and cataract and we can deliver on this as well. I am using the model from the diabetic retinopathy programme to help build our national inherited retinal degeneration service.”
He continued: “You can’t start doing gene therapy until you know all the patients you have and which ones have a condition that is amenable to gene therapy, or for which there is gene therapy available. Without the structure in place, it won’t work.
“It is no different; you just need to get everyone up on the register, to get them imaged and put a treatment plan in place for them.
“If you can get images taken and on a common IT platform, so somebody can review those images, then you can actually have an effective triage system before a patient has even left the GP surgery, an optometry practice or another unit somewhere else. That has been rolled-out in Scotland and they are bringing it in in Northern Ireland. We are shockingly poor in this country in committing to IT infrastructure. That would be the starting point.”