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Understanding the barriers to diabetic retinopathy services

Understand the provider and patient barriers which need to be addressed to provide equitable diabetic retinopathy services.
The target uptake (coverage) of a national, population-based diabetic retinopathy screening programme is 80%. This is difficult to achieve. To achieve high coverage and prevent blindness from diabetic retinopathy, DR services need to ensure that the proportion of people with diabetes who do not attend their appointment for screening or treatment (the non-attendance rate) is as low as possible.
However, many DR programmes are faced with similar challenges of high non-attendance rates for screening and treatment. A high percentage of non attenders show symptoms of proliferative retinopathy when they do attend and attendance for initial laser treatment is reportedly around 70%, but some studies have found 21 to 45% of people default and fail to complete their laser treatment.
So, why do DR services experience high non-attendance and acceptance rates? Is it due to the service provider, the patients, or both? To answer this question, we need to understand both patient and provider barriers to DR services. Across many eye clinics it is a common administrative policy to discharge patients who miss two appointments. However, in DR services it is important to find out and address the local barriers to attendance that people with diabetes are facing, before removing them from the database. Evidence from different places has identified seven broad reasons listed under A to G - why people with diabetes do not come for their regular diabetic retinopathy screening. Lack of awareness about diabetes and its eye complications.
People with diabetes may also not be aware of local screening options available to them or when to start attending. Beliefs these vary from country to country but reports indicate that people with diabetes without symptoms may believe they do not need retinal examinations, that they have mild disease or that they are too old to interfere with their eyes. Cost is a repeated barrier as people with diabetes experience both direct and indirect costs such as travel to the screening centre. For some, the cost of managing the medications for their diabetes is already a challenge. Distance from the hospital, or lack of transport, remains a challenge in many regions particularly for remote and rural populations.
Screening camps and tele-screening programmes are sometimes the only way to reach these people. On a practical level, discomfort caused by the dilating drops used in DR screening, can also prevent people from driving themselves to the screening centre. Effort to attend yet another clinic for their diabetes management. People with diabetes often have multiple hospital appointments and employers may not allow them to take too many days off. Fear of laser treatment and of its impact on their life and jobs. Family support is very important in coming to terms with possible blindness from untreated diabetic retinopathy. Guilt surrounding their personal failure to control their blood sugar levels which leads to retinopathy and having to seek treatment.
There may also be other barriers specific to your own setting. It is important to attempt to understand all the patient barriers to DR screening and treatment in each local setting. This enables providers to develop health education activities and appropriate services to support people with diabetes to attend DR screening and treatment.
Actions that providers can take include: - Raising awareness about diabetes related eye complications through counselling and advisory services. - Having an efficient communication system or a call and recall system to enable people to come to screening and treatment. - Reducing long waiting times. - And, having an efficient referral system with services in accessible locations.
Provider related barriers to DR services are often due to weaknesses in five key areas of planning
and management: - Manpower are there enough trained personnel to deliver screening and grading services and, are there enough ophthalmologists trained to provide DR treatment services? - Materials are there enough, functional, screening equipment and lasers? - Management is there a good call and recall system in place and an efficient referral system for treatment? - Motivation achieving high acceptance rates of DR services and thus effective prevention of blindness from DR is often a positive motivator for staff. It is essential to provide regular training support, especially for graders.
Money a screening service is a very expensive undertaking and its sustainability will depend on the health system.
DR programmes need to take a multipronged approach to address provider barriers, improve service delivery and meet demand.
Areas that need to be covered include: - Recruiting and training staff. - The supply, use and maintenance of instruments and equipment. - Establishing accessible screening services and supportive treatment centres. - Task shifting and taking a team approach to eye care. For example by having non-clinician graders. - Maintaining an efficient call and recall system and ensuring a good flow for people through the screening process to reduce waiting times.
It is important for the planner or manager of a DR service to identify the local barriers. Sometimes provider and patient barriers need to be addressed to create demand and balance it with good service delivery. Considering the equity of a DR service is very important. Often, the most vulnerable people with diabetes are missed out from screening for example the elderly, or people with disabilities.
Equity means providing DR services that are accessible to all people with diabetes within the local context and high quality across all settings.
DR programmes can provide equitable services using different models. Waiting at the centre can work if there is a good register of people with diabetes along with an effective call and recall system to track attendance. Supportive counselling for diabetes management should be provided alongside eye health information.
In many places, such as in India, DR screening in remote or rural locations is conducted through screening camps. Screening equipment is taken to the camps and people with diabetes are given an appropriate eye health examination and referred as required. These services need to be regular and reliable for people to gain confidence in them.
Mobile DR services are sometimes the most practical approach to reach remote settings. These can be exclusively for screening or for both screening and treatment Tele-screening with simultaneous grading at base hospital is another model in use. Referred patients may need to be provided with transport to overcome travel challenges.
Equitable DR services can be implemented in various ways and in conjunction with other eye care services. For example, in the UK optometry services on the high street have been used to screen and refer people with diabetes for DR services.
Finally, centralised services combine DR screening along with regular diabetes checks and blood pressure monitoring and can be useful to manage bookings and to reduce costs, both for hospital administration and to people with diabetes.
In summary: - We need to understand and address the barriers experienced by people with diabetes to increase coverage and attendance rates of DR services. - Eye units also need to assess their own efficiency and effectiveness in providing DR screening and treatment. - Both patient and provider barriers to DR services must be understood and managed in the local setting to achieve a coordinated and sustained increase in both early detection of sight threatening diabetic retinopathy and provision of appropriate treatment.

Non-attendance at diabetic retinopathy (DR) screening or poor acceptance of treatment for diabetic eye disease has potentially serious clinical implications for people with diabetes and financial implications for DR programmes.

What do we mean by non attendance? Every screening service will have a list of people with diabetes who are invited for screening. Within this group, there will be people who do not take up their appointment during the screening period, for example over the last year for an annual screening programme. These people are considered as non attending.

The non attendance rate is calculated as the number not attending divided by the total number invited in that period multiplied by 100.

Illustration of the non attendance rate calculation

Case study: Reasons for non-attendance at screening

An established screening programme found its non attendance rate was 17% and undertook a study to determine the reasons why some people on their database were not attending screening. Interviews were conducted with patients who had attended screening and with patients who had stopped attending over the last 2 years or more or had never attended screening.

Some of their findings were:

  • Regular attenders were highly motivated to attend for screening because they prioritised their general and eye health
  • Those who had not attended for over two years had not prioritised their eye health, most frequently citing work related issues as the reason why
  • Communication paths between health providers and patients who did not attend had broken down, for example due to incorrect or changes to address or phone number
  • Almost all non-attenders did respond to a personal telephone call to arrange a screening appointment
  • Several of the non-attenders needed immediate referral to ophthalmology due to their sight threatening diabetic retinopathy.

Challenges for acceptance of laser treatment

In addition to low attendance rates at screening, many studies have highlighted the challenges people with diabetes encounter in accepting laser treatment for their sight threatening diabetic retinopathy. Acceptance of laser treatment has been found to be as low as 21-45%, with many patients defaulting on their treatment plan.

In this video, we consider both the patient and provider factors that need to be identified and addressed in each local context to prevent blindness from DR. People with diabetes who miss screening appointments are often the most vulnerable and are likely to be at a higher risk of developing visual impairment.

As you watch the video, consider the ways DR programmes can motivate and support people with diabetes to attend screening over a long period of time.

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Diabetic Eye Disease: Building Capacity To Prevent Blindness

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