The slow birth of Diabetic Retinopathy Screening

The long-awaited national diabetic retinopathy screening programme, which is known as Retina Eye Screen, finally began its phased roll-out earlier this year.

The programme was announced in the 2011 HSE service plan after many years of broken promises with earmarked funding of 4ドル million, but was subsequently hit with a number of delays and challenges.

Dr Diarmuid Smith, HSE National Clinical Lead for Diabetes, gave a detailed presentation on the development of the programme during last month’s (May 29-31) Irish College of Ophthalmologists (ICO) Annual Conference in Killarney, which shed some light on the many challenges the programme has faced and the hard work involved in bringing it to fruition.

Delays

Plans for a national diabetic screening programme have been pushed by the Irish ophthalmology and endocrinology professions for more than 20 years. Dr Smith explained that a detailed plan for a programme was turned down in 2002 by the then Health Minister, "but that didn’t stop people, and there were a number of local screening initiatives since then including ones in the north west, north east, Cork, and in individual hospitals such as the Mater and the Royal Victoria Eye and Ear Hospital (RVEEH)... which helped us in the national diabetes clinical care programme advocate for a national screening programme," Dr Smith told the conference.

Elaborating, he said in 2007 a national expert advisory group was set up to look at how diabetes care was delivered nationally and in 2008 one of its subgroups published a framework document for the development of a national diabetic retinopathy screening programme.

The document identified the need for a national office with appropriate staff with the programme to be developed on a four regional area model, with each region needing 23 staff members, a total of 96 people, to roll-out the programme, along with a national diabetes register with a strong IT structure.

"Unfortunately, when that document came out the economy hit a downturn so it became obsolete from the staffing and implementing point of view...there was no money for 96 new people but the document was a great starting point for us to advocate for a national screening programme," Dr Smith commented.

In 2010, the HSE’s clinical care programmes were initiated under Dr Barry White, with diabetes being one of the first programmes, and Dr Smith said it turned to the National Cancer Screening Service for help, which already runs the national breast, cervical and colorectal cancer screening programmes (BreastCheck, CervicalCheck, and BowelScreen) as a natural home for the planned diabetic retinopathy screening programme.

Following agreement on the NCSS’s involvement, a successful business case was made to the HSE and 4ドル million was secured in the 2011 Service Plan to launch the programme. However, getting the programme off the ground has proved more challenging than anticipated, largely due to issues caused by the HSE’s recruitment embargo, which meant the necessary staff could not be secured, Dr Smith explained.

This ultimately meant the programme had to tender for external providers to carry out the screening part of the programme. Two external companies have now been identified — Global Diagnostics (fixed locations in Leinster) and Medical Imaging Ltd (rest of country via mobile units) have now been chosen to roll-out screening nationwide, with treatment to be offered in dedicated centres.

The programme also needed to make sure the treatment centres were fully signed-up and funded to enable treatment of those identified as having issues, he added. Given the costs of the programme and the likely spike in treatment demands, it was felt that a phased roll-out would be best.

Costs

There have also been significant difficulties in ensuring the programme is accurately costed, not least due to the lack of Irish data on eligible patients, treatment costs, etc, as well as the fact that treatment now also includes anti-VEGF injections for some patients as well as laser, Dr Smith acknowledged.

He said current calculations estimated that the programme should cost approximately 14ドル million per year (screening and treatment) when it is fully up and running, and it is estimated it will cost nearly 5ドル million (3ドル.1 million for screening and 1ドル.8 million for treatment) in 2013, and 9ドル.8 million in 2014, with more work needed on accurately costing the required treatment.

Some ophthalmologists speaking during the Q&A session after Dr Smith’s presentation noted that the use of anti-VEGF injections varied from centre-to-centre and Dr Smith said the programme currently did not envisage having set protocols dictating whether they should be used or not — leaving it up the individual practitioners.

Another issue that was raised was that the only licensed intraocular anti-VEGF injection was much more expensive than the one currently used off-licence by many Irish facilities.

Dr Smith acknowledged that the programme was difficult to accurately cost and that anti-VEGF treatment was likely under-costed for 2013, explaining that a new clinical group would examine the use of anti-VEGF injections in each centre with more robust figures due in the 2014 budget.

Screening

Explaining how the programme works, Dr Smith said Diabetic Retina Screen offered free, regular diabetic retinopathy screening to all persons with diabetes aged 12 years and older.

As part of the programme a national diabetes register has been set up, using data from the HSE Primary Care Reimbursement Services (PCRS), Long-Term Illness (LTI) scheme and the Drugs Payment Scheme (DPS), and it currently has 142,000 patients registered, though Dr Smith said there should be about 190,000 eligible patients, as many people with diabetes are undiagnosed.

The programme uses specialised digital photography to detect problems at an early stage to reduce or prevent damage to sight, and calculates that about 18 per cent of screened patients will have a diabetes-related pathology; an estimated 5 per cent will have sight-threatening retinopathy (3 per cent macular oedema and 2 per cent proliferative retinopathy), while a further 7 per cent will have a non-diabetes eye problem.

Dr Smith said he hoped 30 per cent of eligible Irish diabetic patients (approximately 57,000 patients) would be screened in 2013, with the remaining 70 per cent in 2014, and that 100 per cent coverage could be achieved in 2015. The programme expects a 20 per cent ‘do not attend’ rate.

According to the 2013 screening calculations, more than 11,000 patients will have an issue identified through screening, while an estimated 405 will have to be treated for retinopathy issues. He said about 250 patients were screened earlier this year in the Leinster region, with the programme due to "ramp up screening numbers to 500-1000 patients a week" this month if all goes to plan.

In addition, best practice standards for the operation of the programme have been created by a multidisciplinary quality assurance committee, which will be launched later this year.

Challenges

Significant challenges remain to be overcome to ensure Diabetic Retina Screen is fully rolled-out as planned. These include accurate costings on anti-VEGF treatment and ensuring those who are screened have immediate access to any necessary treatment.

Out of the seven centres that have been earmarked under the programme, only four had signed up at the time of Dr Smith’s presentation — RVEEH, the Mater Hospital, Dublin, and Letterkenny and Waterford Regional Hospitals, with Galway, Cork and Limerick yet to sign up.

Dr Smith told the conference that funding would be allocated under the HSE’s new ‘money follows the patient’ funding model, and he called for "every effort to be made for the three centres to sign their memorandums of understanding as soon as possible so screening and treatment can start in those areas".

"We really want to push this, as we want to use the funding we have for 2013. If we don’t use it, it means for 2014 we have to look for more so it would be great if we could make sure all the hospitals are signed up," he maintained.

However, a Limerick-based ophthalmologist told the conference that the new funding stream was more difficult to access and was not ring-fenced like cancer screening funds, which was causing a lot of concern and was a key reason for some centres not signing up. However, Dr Smith urged the remaining centres to "take a leap of faith" and sign up.

Speaking to IMT, Dr Smith was keen to stress that Diabetic Retina Screen was the only "new money" project the HSE has confirmed in recent times, and said "it is fantastic that we finally have a national diabetic retinopathy screening programme".

He was also keen to thank the NCSS, the Department of Health and the HSE for their support for their programme and in particular Minister for Health Dr James Reilly, who Dr Smith said had been very supportive and had written letters at crucial times to keep the pressure on to make sure the programme was delivered.