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Diabetic Retinopathy Screening Services in Scotland: Recommendations for Implementation

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DIABETIC RETINOPATHY SCREENING SERVICES IN SCOTLAND: RECOMMENDATIONS FOR IMPLEMENTATION

Diabetic Retinopathy Screening: Patient Information

93. Chapter 7 of the HTBS HTA report outlines issues related to patients' needs and preferences which should be considered in establishment of the national diabetic retinopathy screening service. The report identified the requirement for clear information about the need for screening, the limitations of screening, what would happen during screening and subsequent treatment as well as the need for timely reporting of results. To achieve this, effective information must be provided to people with diabetes and to healthcare professionals. There must also be good communication between professionals and people with diabetes, with provision of support where required.

94. NHS Glasgow is establishing a diabetic retinopathy screening programme in line with the HTBS recommendations. They have drafted a suite of letters for patients and professionals for all stages of the process (initial and follow-up invitations, referral and reporting results). All letters have been produced according to RNIB standards and are suitable for people with visual impairment. These letters should be piloted and modified in the light of patient comments). When finalised, the suite of letters will be included in the DRS Manual for use across Scotland. Box 2 below sets out the range of letters required.

95. In addition, a patient information leaflet is required to inform people with diabetes about the diabetic retinopathy screening programme in Scotland (including the screening process, its limitations and possible outcomes) and so enable them to make an informed decision about attending screening. It should have space available for the addition of information about local arrangements (e.g. location and contacts). Several examples of leaflets from regional programmes were provided in the HTA report and two good general texts are available from RNIB Scotland < www.rnib.org.uk> and Diabetes UK < www.diabetes.org.uk>. A national leaflet has been created and will be inserted in the DRS Manual and published on the diabetes website < www.diabetesinscotland.org> for use throughout Scotland.

Box 2: Diabetic Retinopathy Screening Programme Standard Letters

A diabetic retinopathy screening programme requires a range of different standard letters. A full suite of letters will be available in the DRS Manual. The intention is that all letters will be produced automatically by the software systems associated with image collection and grading.

1. Letter to patient giving time and date of appointment and details of what happens at examination
2. Letter to patient saying that they did not attend and requesting them to make a further appointment
3. Letter to patient saying that they cancelled and giving another appointment date
4. Letter to patient indicating no retinopathy exists and that they will be recalled in 1 year
5. Letter to patient indicating mild background retinopathy exists and that they will be recalled in 1 year
6. Letter to patient indicating observable maculopathy exists and that they will be recalled in 6 months
7. Letter to patient indicating that they have been referred to an ophthalmologist for further examination
8. Letter to patient requesting that they attend a slit lamp examiner for further examination (ungradeable photograph, bad photograph)
9. Letter to GP with results of retinal screening examination and action taken
10. Letter of referral to ophthalmologist with results of retinal screening examination (maculopathy, severe background retinopathy, proliferative retinopathy)
11. Letter to patient reminding them that they should have their eyes checked by slit lamp examination because of a technical failure
12. Letter to GP with results of retinal screening examination (slit lamp)
13. Letter to patient reminding them of request to attend for retinal screening
14. Letter to GP after 3 DNAs or CNAs by patient
15. Letter to patient, for second and subsequent year inviting them to attend for retinal screening
16. Letter to eye department receptionist with enquiry regarding patient already attending for eye examination

96. Boards will need to fund production of these leaflets. Information should follow RNIB guidance (14) to ensure accessibility to people with impaired vision. Translations should also be available. This will be dependent on the local diabetic population but given the prevalence of diabetes in ethnic minorities, translations particularly in Urdu, Punjabi, Hindi, Chinese and Gaelic should be provided. Leaflets in other languages should be made available on request. To reduce duplication these translations would be best organised nationally and made available on the diabetes website.

Key statement 46: Patients require appropriate and consistent information about the Scottish screening programme for diabetic retinopathy. A single patient information leaflet has been developed and will be published in the DRS manual and on the website. The manual will also contain example letters to patients and healthcare professionals to ensure consistency of messages to patients throughout the invitation, screening and treatment process.


Key statement 47: Patient information should be accessible to people with impaired vision and should conform with RNIB guidance (2001).


Key statement 48: Patient information leaflets should be available in relevant minority languages. Urdu, Punjabi, Hindi, Chinese and Gaelic texts will be particularly relevant for Scotland. These leaflets should be created centrally and made available for general use via the diabetes website.

97. The importance of special initiatives to communicate with teenagers is understood and should be considered after the general patient information leaflet is available.

Diabetic Retinopathy Screening: Research

98. The HTBS report identified a number of areas requiring additional research, audit and development. These will test assumptions and allow improvement in the national programme in the light of experience.

Clinical effectiveness

  • Evaluate the role of mydriasis and multiple/single fields in screening by retinal photography;

  • estimate failure rates in the proposed system;

  • test quality assurance measures for slit lamp evaluation to ensure that they reach a high and uniform quality standard;

  • evaluate the use of automated grading by computer;

  • assess the role of scanning laser ophthalmoscopy in diabetic retinopathy screening.

Organisational issues

  • Investigate the possibility of less frequent screening in some patient groups;

  • develop a national training and accreditation scheme for all those undertaking retinal grading;

  • develop a national treatment protocol for the administration of the mydriatic agent tropicamide;

  • establish a robust quality assurance scheme;

  • examine the use of compressed JPEG images, lossless compression and laptop screens for grading;

  • use current expertise to equip mobile retinal screening units for the national programme, ensuring easy access for patients.

Patient issues

  • determine barriers to attendance for screening;

  • evaluate factors that encourage screening attendance (and those most and least likely to be influenced by the intervention):

    • educational material (leaflets, videos, media for a variety of sub- groups);

    • written reminders (benefits of multiple reminders and style of invitation);

    • advertising campaigns (press, television and radio);

    • use of educators;

    • peer education (particularly for teenagers);

    • dissemination points.

Economic evaluation

  • Monitor attendance rates geographically and for different modalities;

  • estimate initial levels of diabetic retinopathy;

  • estimate net effect on both referrals and treatments for diabetic retinopathy;

  • estimate net effect on both referrals and treatment for macular oedema;

  • estimate net effect on proportion of the diabetic population who are registered blind;

  • estimated budget vs. actual costs.

Key statement 49: The research topics identified in the HTBS report as well as further research questions which become apparent should be developed so that appropriate modification of the screening programme might be introduced in the light of experience.

99. Whilst some of these questions will be answered in the course of operating a systematic screening programme, others will require specific research funding. The Scottish Diabetes Group and the Chief Scientist Office jointly have recently established a Diabetes Research Group to provide a focus for diabetes research in Scotland and to assist those with research ideas to obtain grants. The DRSIG recommends that the Diabetes Research Group support research into retinopathy screening.

Key statement 50: The newly established Diabetes Research Group should explore ways of ensuring that the research requirements of the DRS programme are implemented.

100. The DRSIG was pleased to note that the Grampian Diabetes Retinal Screening Programme, Grampian Primary Care Trust, in conjunction with the Department of Bio-Medical Physics, Aberdeen University, have been awarded a full grant by the Chief Scientist Office to investigate the "role of automated grading of diabetic retinopathy in a primary care screening programme". It is hoped that this study of the images of approximately 6,700 patients will confirm earlier pilot work thus enabling the introduction of automated level-one grading into the Scottish Diabetic Retinopathy Screening Programme.

101. It is hoped that with the support of the Scottish Diabetes Group, the implementation of the DRS programme and the creation of the DRS collaborative network will also see an increase in the number of collaborative research projects being developed both within Scotland and with other parts of the UK.

Diabetic Retinopathy Screening: Funding Requirements

102. The HTBS report included detailed calculations to assess the cost of implementing a DRS programme in Scotland. These calculations have been updated in the light of additional information (including a request for information to clarify the full costs of call/recall and grading software), new developments and the recommendations of this report. The analyses have also been extended to provide the costs of implementing alternative screening scenarios (for example if screening were all hospital based or all mobile van based) for each NHS Board. Both the figures from the original HTBS report and the updated costings are available from the HTBS (Health Technology Assessment) section of the NHS Quality Improvement Scotland website < www.nhshealthquality.org>. However, the costs remain substantially the same and the conclusion is unchanged - that moving from an opportunistic screening approach to a national systematic DRS programme is cost effective.

103. Implementation in Scotland of a fully operational, national DRS programme (on the basis of a diabetic population of 150,000) will require approximately 2.5 million capital over three years and around 3 million per annum in revenue to operate once fully established. For most NHS Boards this represents between 150,000 and 350,000 per year. This is not all 'new money' because most Boards are already screening a significant number of people with diabetes. Cost efficiency will be increased if NHS Boards provide services jointly.

Key statement 51: NHS Boards should provide funding to implement a comprehensive DRS programme in their area. Collaboration between areas to achieve optimal use of resources will result in important cost savings. NHS Boards should therefore explore appropriate opportunities to combine, for example, call/recall units for diabetic retinopathy with other NHS board screening units, or with diabetic screening offices in other boards. NHS Boards should also explore the potential to realise savings from joint provision of the service across board boundaries.

104. The SEHD has made it clear that every NHS Board must ensure that they provide DRS for all patients who require it and has accepted that full implementation may take until March 2006. In reporting progress on implementation, NHS Boards will be expected to clarify the funding arrangements to deliver the DRS programme in the long term.

Components of the DRS Programme

105. NHS Boards are responsible for providing DRS services. However, a number of functions need to be provided centrally and will be organised more economically on a national basis. Such central support will also make it more likely that uniform standards and protocols will be adopted across the country. Box 3 outlines where organisational responsibility rests for funding different components of the diabetic retinopathy screening programme.

Key statement 52: The Scottish Executive, National Services Division and NHS Quality Improvement Scotland should provide the resources necessary to implement the central components of diabetic retinopathy screening, to include central co-ordination, specification and documentation of standards, central elements of QA (including proficiency testing), a DRS manual, a training handbook, software procurement and patient information material.

Box 3: Responsibility for funding components of the diabetic retinopathy screening programme

Component

Responsibility to fund

Central co-ordination. Costs of running the DRS Collaborative network, including the DRS Network Co-ordinator and the Clinical Lead.

SEHD/SDG

Standards documentation.

NHSQIS

DRS Manual. Publication and maintenance.

NSD

Training Handbook.

SEHD/SDG

Training.

NHS Boards (a)

Diabetes registers.

NHS Boards + SCI-DC

Software - specification, co-ordination of procurement, purchase.

NSD/SEHD

Software - implementation.

NHS Boards

Proficiency testing.

NSD/SEHD

Procurement of digital cameras - central co-ordination.

SEHD/SDG (b)

Purchase of digital cameras.

NHS Boards

Local administration costs (including regional call/recall offices).

NHS Boards

Mobile units (purchase or lease).

NHS Boards

Staff costs

NHS Boards

- Nurses

- MTOs

- Optometrists

- Camera Operators

- Graders

- Consultant Diabetologists

- Ophthalmologists

(a) NSD will have a role in commissioning training.
(b) The main options for procuring digital cameras are for NHS Boards to manage their own procurement, to organise a Scotland-wide procurement exercise, or to seek to put in place a UK procurement. If central co-ordination is required, this cost will be picked up centrally.

106. Discussions have been held to explore the potential to develop the specification and procurement of cameras on a UK rather than Scottish basis. The success of these discussions will depend upon how closely the user requirements of Scotland match the rest of the UK. Given that UK specification and procurement approach could increase the effectiveness of negotiations with suppliers, the DRSIG welcomes these moves. However, it is strongly recommended that Scotland should not be delay its implementation timetable for DRS unless it is certain that a UK approach will be successful and beneficial. Moreover, the increased complexity of managing a UK project may also increase the project risk and make delivery of Scottish requirements more difficult to achieve. The potential savings must be balanced against these potential risks.

Key statement 53: Procurement of cameras on a UK basis may secure significant economies of scale and is the preferred option, provided that the UK user requirements are similar to the Scottish user requirements and that UK procurement does not unduly increase project or financial risk, or delay the implementation timetable. Although the benefits of UK procurement may not be achievable in the short term, development of close contacts with UK colleagues will make joint working easier in the future.

Indicative Fees for Optometry Services

107. Discussions with the bodies representing Optometry in Scotland have led to consensus on an appropriate fee structure to enable the skills of optometrists to be utilised in a primary care setting. There is no central mechanism for determining such fees and each NHS Board has the authority to negotiate with optometrist within their area. However, the DRSIG was encouraged by all sides to provide an indicative fee structure. Box 4 sets out indicative levels of fees for various optometry services.

Box 4: Indicative fees for optometry services to support the DRS programme

1

Diabetic Retinopathy Screening using single field non-mydriatic retinal photography and primary grading of the image.

15.00

2

Mydriasis and second set of digital images in cases of technical failure with 1 above and primary grading of the image.

10.00

3

Mydriatic imaging and primary grading of the image (i.e. cases where previous screening has identified that non-mydriatic screening is ineffective).

20.00

4

Secondary grading of images provided by 1 & 2 above and or visualised in 5 below including immediate provision of outcomes and triage discussion with patients

10.00

5

Slit lamp biomicroscopy with mydriasis including primary grading in cases of technical failure in 1 & 2 above or following referral from other screeners.

25.00

Diabetic Retinopathy Screening: Conclusions

108. Diabetic retinopathy screening is an essential part of good diabetes care and a key component of the Scottish Executive's Scottish Diabetes Framework. Launching the HTBS report on the organisation of diabetic retinopathy services in April 2002 Malcolm Chisholm, Minister for Health and Community Care made it clear that effective eye screening should be offered to all people with diabetes in Scotland who require it. This report makes recommendations for delivering that commitment as well as summarising the work which has been undertaken since last April. Progress has been made on a number of fronts including the development and piloting of training courses for screeners and graders, the definition of standards for DRS by NHS Quality Improvement Scotland and the specification of the software to support the screening programme. Locally too, significant progress is being made to populate diabetes registers and to put in place the resources required to deliver a DRS service. Providing a comprehensive, consistent and robust diabetic retinopathy programme presents a complex problem which cannot be addressed overnight. Having considered the functional and organisational requirements, and the capacity of current services, the DRSIG have put forward a series of pragmatic recommendations to ensure that retinopathy screening is made widely available within a reasonable timescale. The challenge now is to put these recommendations into practice.