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Systematic screening in the UK: What have we learned?

Lessons learnt on the English DR screening programme and practical reflection for programmes in low resources settings
EFFENDY: Thank you, Peter, for joining us today. My first question is if you followed the stages in a rationed health care system like NHS, how did you make your case successfully to compete for funds for this expensive high tech eye screening programme?
PETER: The main thing is getting everybody to speak with one voice. So we had diabetologists, ophthalmologists, optometrists all saying that they felt that this was needed. And then we needed some high level political support and we needed support from patient groups. So if the patient groups and all the professionals say the same thing, it’s much more difficult for politicians to ignore you. And as you’d know from a lot of societies, optometrists don’t always agree with ophthalmologists and diabetologists don’t always agree, either. And so in my view, I think divide and rule works in a lot of situations where politicians are asked for money.
It’s much more difficult for them if everybody is united with one voice, and I’m sure that’s why we were successful.
EFFENDY: Based on your experience, where and how did UK DR screening program start and where should a resource limited health service start?
PETER: Well, I think the reason that people say that there’s no point in screening if there’s no treatment available is that I’ve been to a number of countries where they haven’t got a functioning laser. Now, there’s all sorts of reasons why that might not be functioning. It might be that the equipment isn’t of adequate standard or it might be that they haven’t got the personnel trained who are prepared to do the treatment. But if you can’t treat a patient for a condition, there really isn’t any point in trying to find that condition.
And my own view is that the laser treatment is the key because in the UK, we have actually managed to knock it off as the leading cause of blindness in the working age group, and we did that before we had the introduction of the expensive VEGF inhibitors. So I think that if you can get laser in place, then really just going out and trying to find patients at the appropriate stage of the disease process makes it very much easier to treat them than when they’re very advanced. And even vitrectomies are very difficult in some of the very advanced diabetic eye disease.
So there needs to be treatment available for the diabetes that the patient understands that they need to take in order to get good control, and then, those patients do need to have their eyes checked at intervals. And whether you screen all the population or whether you go for at risk groups, people who have diabetes for a longer period of time with poorer control are much more at risk. I think people with type 1 who’ve had it for a long time are at higher risk, as well. So I think within any society, you have to work out which groups do you want to start with.
EFFENDY: And what should be the strategic approach for development in a resource limited setting?
PETER: Well, I think you have to work out in any setting if you do have any form of eye screening, how are you going to invite the patients? Which patients are you going to invite? So do they have a national ID number? Do they have a primary care physician? Where are you going to find people with diabetes? In the UK, we know that all of our patients were registered with a general practitioner and they had a diagnosis of diabetes in primary care, so we concentrated our attentions on finding patients through primary care. But in another setting, it might be completely different and you might want to concentrate on people who attend clinics for people with diabetes.
Or if you know that there are people out there in primary care who have diabetes who aren’t getting their eyes looked at, you might want to look at people who’ve had diabetes for a longer period of time because it’s very much dependent on duration, as well. I think when it comes to populations that are more difficult to reach, I think you have to look at the individual population. I know that in the North American Indian population or Eskimo population, they actually take treatment facilities with them. They go and they screen and then offer treatment there, rather than having to fly a patient down for treatment.
So I think you have to work out how you’re going to examine people’s eyes within the setting that you’re in. I think probably quite critical is to have a test that’s quite inexpensive because there’s lots of very expensive equipment out there now, but for a screening program where you’re just wanting to see quite a lot of patients, if the test is inexpensive but still accurate, then it’s worth doing.
EFFENDY: My next question is about the systems developed in the UK screening programme, from training graders and software. So what has been your overall experience, and is it practically transferable or usable for other eye health systems globally?
PETER: In England, we would have loved to have one supplier. I don’t really mind which one it was, but the fact that we ended up with three software suppliers, the problem we had was that the individual areas were upgrading at different times, so there were different versions even of those three software suppliers. So we ended up with 45 versions of three software systems. Now, we’ve managed to get that back to three, but the smaller the number of software systems and versions, the easier it is to compare between different services. And that’s quite important when you’re trying to run a population based screening program, that you can do comparisons and you can improve year on year.
With respect to training people, we find that it depends who’s doing your screening for you. In some countries, they want the doctors to do everything, but that’s not always the sensible thing because doctors are trained to treat disease. And for example, in England, 65% of the photographs taken are normal. And doctors get very bored doing that, whereas training graders to protocols, they are much happier to follow a protocol and spend time looking to check that it’s normal. But if you are then using a new workforce, you have to have, in my view, a minimum qualification for them in order to reassure the general public, and so we developed a minimum qualification for them.
And we also developed a test set each month that 1,500 graders do in the English programme and they all have to grade 20 image sets a month and score at a reasonable level, and if they’re missing serious disease and calling it very mild or no diabetic eye disease, then they have to be retrained within their programmes. Now, we have developed an international version of that that is used in quite a few countries. So it’s been used in Africa, Bangladesh, Indonesia, and in China. We have it in English, Chinese, Spanish, and Bahasa Indonesian at the moment.
EFFENDY: Let’s talk about quality assurance. When was it started and how have the indicators been used to guide and develop this UK screening programme?
PETER: We started quality assurance right at the beginning. It was an important part of the development of a public health programme. So the sort of standards we’ve developed are things like the percentage of the known population of people with diabetes that are invited, the percentage that actually take up the screening test, how quickly the results are sent, and things like the time between the patient being screened and being seen by the ophthalmologist if they are screened positive for proliferative retinopathy, which is the more serious condition. And once you’ve got data in to say, well, actually, this year, this was the percentage of people who got invited.
And say in the first year, you invite 50%, then you set it up and ramp it up. And then now, we’re inviting 100%. And the same when it comes to uptake. The current uptake in the English screening programme is over 80%. It’s early 80s. And that’s each year. And that’s higher than the uptake for any form of eye examination in people with diabetes in most countries. And that’s because we’ve had this quality standard, and so the services have been trying very hard to persuade their patients to come and have their eyes photographed.
EFFENDY: So what is the main impact of this programme?
PETER: In the UK, diabetes was always the leading cause of blindness in the working age group. In 2014, there was a publication in “BMJ Open” which demonstrated that in the latest period that they had looked at blindness registrations in England, which was taken up to I think it was 2000 to 2010, it had become no longer the leading cause of blindness in the working age group. So in England and Wales, it has significantly contributed to the blindness reduction. Now, it’s not the only cause. Better control of diabetes would clearly be a factor.
But it’s had a major impact because we’ve been detecting people at the stage where it is easier to treat them and getting good results from the treatment as a result. In my own population here in Gloucestershire, I started the first digital screening programme in the country in 1998. And between 2005 and 2008, we were registering five people blind a year. And partially sighted or sight impaired, which is the new term, we were registering nine people. And we’ve managed in the last three years to reduce that to one person a year who is on the full register of blind or severely sight impaired and we’ve also more than halved the partially sighted or sight impaired from nine to four.
So I’m just watching it locally. And of course, when I qualified, I was doing clinics for people with diabetes and there were a lot of people with white sticks and guide dogs, and we hardly ever see that from diabetes nowadays. Even those who are registered have got navigatable vision. So it’s had a major impact.
EFFENDY: Thank you very much for joining us today, Peter.
PETER: Pleasure. Nice to meet you.

In this video, Professor Peter Scanlon, Clinical Director for the English NHS National Diabetic Eye Screening Programme since 2002, shares his insights with Mr Effendi Hashim from Hospital Putrajaya, Malaysia. They discuss how the English programme was set up, its achievements and how the lessons learnt might be applied by programmes in low resource settings.

Below are some more details, adapted from a recent paper (Scanlon 2017), on the programme’s development, activities and impacts.

As you watch the video and read the text consider how important information systems are for providing evidence to guide the development and management of a screening programme, within a health system.

The English NHS Diabetic Eye Screening Programme

The programme aims to reduce the risk of sight loss amongst people with diabetes by prompt identification and, where necessary, effective treatment for sight-threatening diabetic retinopathy across England.

To deliver evidence-based screening the programme needed to consider 11 different stages:

  1. Manoeuvring around the politics of funding
  2. Are assessment and treatment facilities available?
  3. Identify cohort for invitation and call—recall
  4. How to invite them?
  5. Informing the patients and maximising uptake
  6. Establish an IT infrastructure
  7. Choose a camera and decide on compression levels for photographs
  8. The test
  9. The grading referral criteria and viewing of the images
  10. Employ and train a competent workforce
  11. Introduce Quality Assurance.

To get the programme established it was critical that diabetologists, ophthalmologists, public health doctors and optometrists came together and spoke with one voice.

Recent activities and impacts

By 2014, for the first time in at least five decades, diabetic retinopathy (DR)/maculopathy was no longer the leading cause of certifiable blindness amongst working age adults in England and Wales, having been overtaken by inherited retinal disorders.

In 2015 and 2016:

  • A total of 2,144,007 people with diabetes were screened
  • Uptake was 82.8%
  • New registrations were 326,587
  • 52,597 referrals were made for identifications of maculopathy or pre-proliferative DR
  • 7,593 urgent referrals were made for proliferative DR
  • Rate of DR per 100,000 people screened was 2,807.

Screening for sight-threatening diabetic retinopathy in England has been shown to be very effective in reducing blindness due to DR and in reducing the number of vitrectomy surgeries which need to be performed on advanced disease.

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Diabetic Eye Disease: Building Capacity To Prevent Blindness

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