This content originally appeared on diaTribe. Republished with permission.
By Renza Scibilia and Chris ‘Grumpy Pumper’ Aldred
Regular eye screenings are important for people with diabetes. Learn more about diabetes-related retinopathy screenings from diabetes advocates Renza and Grumpy
What Causes Diabetes-Related Retinopathy?
Diabetes-related retinopathy occurs when many years of high blood sugar levels cause damage to blood vessels in the eye. This damage triggers your body to make more blood vessels – but these new vessels are fragile and easily damaged, which can result in bleeding or scarring in the eye that worsens vision. Fortunately, there are medications available that can improve symptoms. For more background on diabetes-related retinopathy, see here.
There is more to developing a diabetes-related eye condition than just A1C. Time in range also plays a role, as seen by recent research – diaTribe will be updating readers on this in the coming months! Blood pressure also plays an important role in our risk, as can rapid fluctuations in glucose levels. Family history of eye conditions, such as glaucoma and age-related macular degeneration (AMD), may increase the risk of diabetes-related eye issues, so knowing and sharing your family history is important when discussing your eyes at screening appointments.
The importance of eye screenings
In diaTribe’s past interview with ophthalmologist (eye doctor) Dr. Ivan Suñer of Memorial Hospital of Tampa, we learned that people with retinopathy often have no noticeable symptoms until they are at high risk for losing their vision. Early detection of diabetes-related retinopathy is crucial to prevent vision loss. Thus, his number one piece of advice was to see a doctor regularly for eye screenings. The American Diabetes Association (ADA) recommends that people with diabetes get a comprehensive eye exam every two years if there is no evidence of retinopathy. For those with retinopathy, the ADA recommends an eye exam every year.
Given the importance of eye screenings, Renza and Grumpy – within a few days of each other – both recently tweeted about our upcoming eye screening checks. (Renza has annual visits to her private ophthalmologist as suggested by Australian guidelines; Grumps receives a screening every three to four months to monitor some damage in his left eye.)
Both of us (Renza and Grumpy) are fortunate that we live in countries with national eye screening programs for people with diabetes. (Australia’s program was launched just this year; the UK program has been around for a number of years now.)
In Australia, KeepSight operates as a “recall and reminder” system. People with diabetes register with the program and are sent prompts to make appointments. The frequency of these reminders is individually tailored, determined by how frequently screening checks are required.
In the UK, the Diabetic Eye Screening Program (time for a rename and some #LanguageMatters attention!) is overseen by the National Health Service (NHS). Screening appointments are made for people with diabetes, and follow up letters are sent with the results.
National screening programs work because they offer a coordinated and consistent approach that has the potential to reach a wide number of people. In an ideal world, they capture all people living with diabetes, ensuring screening occurs at the right time, changes to the eyes are identified early, and appropriate treatment is started immediately.
When implemented properly, the results of screening programs can be staggering. Before the UK program was established, diabetes-related eye conditions were the leading cause of preventable blindness in the UK. That is no longer the case.
The challenges of eye screenings
Not many people with diabetes look forward to their eye screenings. And many of us will look for any excuse to put off making or going to our screening appointment. There are a number of reasons for that.
While it may be one of the least invasive checks on our screening list, it can be one of the most disruptive. If pupil dilating drops are required, the rest of the day is often a write-off. Even when the blurred vision goes, we are often left feeling tired or with a headache from the bright light and eye strain caused by the drops.
On top of organizing time off work or school for ourselves, we may need to involve a friend or family member to take us to the appointment. All of these things can make coordination of our appointment difficult and become a reason that we postpone or cancel.
But logistics are only one reason we may decide to put off our appointment. Many of us are anxious about results from screening checks. Diabetes-related complications are often presented to us in such a scary and threatening way that we are frightened to organize and attend appointments. (Renza recently wrote this piece, “Why Scare Tactics Don’t Work in Diabetes” for diaTribe about how her introduction to diabetes-related complications when she was diagnosed with diabetes scared her so much that she was simply unable to face the thought of diabetes screenings.)
And those of us who have missed an appointment or two, or have never been screened before, become worried that we will be “told off” when we do eventually gather the courage to attend.
What works and how can we do better?
- Making the process of actually having a diabetes eye check as easy and smooth as possible will always mean more uptake. Bringing screening to the people, rather than expecting people to travel long distances, will reduce a significant barrier to keeping up-to-date with screening checks. There are a number of different initiatives that are working toward making screening checks more convenient.
- Pharmacies are being used in some areas to provide initial screening checks (using a retinal scanning camera), with any necessary follow-up being conducted by specialist eye health care professionals. This works well because it means the initial screening check – which will pick up any changes – is done somewhere convenient and familiar, and without the need for dilating drops. Hopefully this will reduce some of the nervousness people may feel about going to a clinic or hospital setting.
- Coordinated reminder systems are great! Anything that helps ease the weight of “diabetes administration” is welcome to help with the daily tasks demanded by diabetes.
- Counselling around the visit would also be helpful for some!
Having any sort of diabetes-related complications screening is never just about the process of attending and completing the screening. Just the thought of, and planning for, the appointment can be distressing for people, especially for those who have had complications presented to them in a scary or threatening manner. Offering counselling before and/or after screening is a great idea to help address some of those anxieties, and provide people with practical tips for coping.
Screening checks are part of the process of managing diabetes-related complications
We’d urge healthcare professionals to acknowledge just how difficult it can be for someone to simply show up for a screening appointment, and commend those that do. A little word of understanding can go a very long way!
As ever, peer support can be hugely beneficial. Whether it be sharing stories about how people manage to navigate anxieties and nervousness about eye screening checks, or how people have dealt with a diagnosis, speaking with others who have walked a similar path can be useful and can help reduce the isolation many people feel.
And finally, most people with diabetes do know the importance of regular complications screening, and that early detection and treatment will likely result in better outcomes. (In Grumps’ case, this early detection has meant that the issues have not progressed for several years and that, to date, no treatments have been required.) But that is not enough. We need to follow messages and campaigns that highlight the importance of screening with advice on how to make the process easier and more comfortable for people with diabetes, while recognizing how difficult it can be. Humanizing the experience of screening, and giving results and follow- up, is all an important part of the story.