Let’s Not Forget the Patient!

“We need the motivation, resources and understanding to have an effective two-way conversation with patients that guarantees they understand their problem and are empowered with adequate information to make autonomous decisions about how they want to manage their condition.”

George.jpg

Telemedicine can quickly become a very technical topic, with emphasis on digital cameras, cloud-based storage and, more recently, machine learning, artificial intelligence and algorithms. So we wanted to bring the story of diabetic retinopathy right back to the issue of patient health: saving the vision of actual individuals. We turned to our EyePACS Chief Medical Officer, Dr. George Bresnick, M.D., (who lives with his wife in Minnesota). Recently one of our staff had the opportunity to interview Dr. Bresnick, and the conversation went like this:

Staff: Dr. Bresnick, you were already a well-established, experienced ophthalmologist when EyePACS was created about 15 or 16 years ago. Why did you throw your support behind this telemedicine start-up? 

11_phone  San Miguel Feb. 3, 2011 005.jpg

Dr. Bresnick: I was doing public health work in semi-rural Mexico, trying to set up a blindness-from-diabetes prevention program. The number of diabetic patients needing retinal screening compared to the available eye care resources was overwhelming. That’s when I met Dr. Jorge Cuadros in California, and we both realized that a telemedicine-based screening program using EyePACS might be the answer. Teaching local medical personnel to take retinal photographs and transmit them on the internet for evaluation by EyePACS eye care experts helped us solve our problem, especially for poor people of limited means.

Staff: What is it about diabetes in particular that makes retinopathy such a threat, and why the annual screening for diabetes patients as opposed to the rest of us, who might see an optometrist every two or three years?

Dr. Bresnick: For reasons not very well understood, persistent high blood sugar damages the retinal blood vessels over a long period of time. This can be further aggravated by poorly controlled blood pressure and high fat levels in the blood. These three things, unfortunately, occur all too frequently in people with diabetes. Retinopathy doesn’t happen right away, but the longer the person has poorly controlled diabetes, the more likely they will be to develop it. In the old days (50 years ago), there was no treatment for the damaged blood vessels, and people with diabetes could go blind from bleeding inside the eye. Today there are several very successful treatments for diabetic retinopathy, and almost all of the vision impairment from diabetes can be prevented. HOWEVER, the best results from treatment happen when the eye is treated beforeit actually bleeds. Regular retinal screening detects retinopathy before it causes the person with diabetes any vision symptoms. That’s why annual retinal screening is universally recommended for all people with diabetes.

Staff: What is it like to have diabetic retinopathy? Let’s say you don’t get the annual screening, and you do lose your vision. What are the early symptoms, and how does the disease progress, and how quickly? 

Dr. Bresnick: There are really two kinds of symptoms. One is just a blurriness of vision in one or both eyes that doesn’t get better by itself. Now, blurred vision can come and go – especially in people with diabetes whose blood sugar levels rise and fall. In those cases, when the blood sugar level returns to normal, the blurred vision (or temporary near-sightedness) can go away. Some blurred vision is simply due to “presbyopia,” the reduction in focusing power of the eye as we get older (usually beginning in the mid-forties). That can be easily corrected with reading glasses.  

 Macular Edema: The red spots in this image are hemorrhages, which show blood vessel damage from uncontrolled blood sugar. The yellow spots and their proximity to the macula, which is responsible for sharp vision, indicate macular edema. Fluid leakage from damaged blood vessels near the macula can cause blurriness in a patient's vision. 

Macular Edema: The red spots in this image are hemorrhages, which show blood vessel damage from uncontrolled blood sugar. The yellow spots and their proximity to the macula, which is responsible for sharp vision, indicate macular edema. Fluid leakage from damaged blood vessels near the macula can cause blurriness in a patient's vision. 

But blurred vision caused by leakage of fluid from small retinal blood vessels into the central retina, the macula, causes “macular edema,” which can show up as difficulty reading, watching TV, or driving – and it doesn’t go away! Vision loss from diabetic macular edema often affects one eye more than the other, and it doesn’t change very much over a number of days. With macular edema, the patient doesn't experience a sudden loss of vision, but the condition often gets worse very slowly over a number of weeks or months.

The other kind of symptom from diabetic retinopathy is caused by bleeding inside the eye. Initially, the patient sees large “floaters” or “cobwebs” in the vision. If the bleeding gets worse, the whole vision can become dark or completely obscured.  This serious progression can happen over a matter of only days or weeks.

Staff: If the screening indicates I have vision-threatening diabetic retinopathy – and then the eye specialist says I need treatment – what will that treatment be? Will it be painful? And is it likely to save my sight?

Dr. Bresnick: In general, the eye treatment for diabetic retinopathy is very successful in preventing vision loss from occurring, or, if vision loss has already started, in keeping it from getting worse. Treatment is less successful in bringing back vision already lost, but even this is possible in some cases. Two major types of treatment are used today: laser treatment to cauterize abnormal retinal blood vessels, and injection of a specific protein, known as anti-Vascular Endothelial Growth Factor (anti-VEGF) into the eye to prevent further leakage or bleeding from the blood vessels. 

8_Guanajuato San mIguel November 2011 107 (1).jpg

Laser treatment (using a bright, highly focused light) is the more traditional treatment, and generally is only slightly, if at all, uncomfortable. The amount of laser treatment needed depends on the type and severity of retinopathy present: more laser and more treatment sessions are needed for eyes with bleeding than for eyes with macular edema. 

 After panretinal photocoagulation (PRP) treatment, the abnormal blood vessels have been cauterized.

After panretinal photocoagulation (PRP) treatment, the abnormal blood vessels have been cauterized.

The injection of anti-VEGF proteins into the vitreous (the clear jelly-like substance that fills the interior of the eye) is a more recent development, but a very exciting one, because the results in stabilizing or improving vision are often better than with laser alone. Often the injections have to be repeated monthly over 6 months or longer until the eye stabilizes. Sometimes laser treatment is added if the injections alone are insufficient. Perhaps surprisingly, the injections are not at all painful, and are performed with the patient seated in a chair. Both laser treatment and intravitreal injection are performed as outpatient procedures.

Staff: Right here on the EyePACS blog it has been stated that only about 22% of diabetes patients referred to an eye specialist for either evaluation or treatment actually follow up on the appointment. Why would that figure be so low? Don’t they understand the seriousness of their condition?

Dr. Bresnick: The 22% figure refers to a specific study that was done a number of years ago when telemedicine for diabetic retinopathy screening was just beginning. We think the rate is better today, but still far from adequate. Although you might think that being told they have a treatable condition would galvanize people into immediate action, that’s just not always true. 

Picture2.jpg

The problem is really multidimensional. Consider a patient who is told he has vision-threatening retinopathy, but he has no symptoms of vision loss. It can be hard to understand or believe in the danger when you can’t see it. Now factor in all the associated challenges: getting an appointment for a specialty referral; taking off time from work or finding someone to drive you; dealing with multiple medical problems, as is true for many people with diabetes; and finding the funds to pay for treatment, especially for people with no medical insurance or inadequate insurance. 

Despite this, we believe that if more time can be spent explaining to patients the nature of their eye problem, pointing out the rather remarkable success with treatment, and listening to each patient’s unique needs and concerns, these problems too can be solved. That is our goal at EyePACS over the next few years.

Staff: How does the telemedicine approach make such a difference? 

Picture3.jpg

Dr. Bresnick: When effective retinopathy treatments were developed in the 1970s and 80s, and we knew regular retinal exams could identify the people needing that treatment, all diabetes patients were urged to have annual exams. However, most such exams had to be done by eye specialists; primary care personnel were not trained to perform the exams. Overall, only about 50% of diabetes patients were receiving the exam, and, in some settings, far fewer than half were getting the vision-saving examination. We reasoned that bringing the retinal exam expertise into primary care would improve those rates. If we could provide a special retinal camera, and, with internet access, the photos could be sent to the eye care specialists, we might solve the problem. EyePACS became the “telemedicine solution,” and the rates of annual retinal exams for people with diabetes in many places soared.

Staff: How can you, as a board-certified ophthalmologist, be confident that the EyePACS panel of readers who evaluate the images submitted from distant sites are really getting it right?

Dr. Bresnick: At first, there was some healthy skepticism about this among some eye care professionals. However, a number of studies have shown that, not only does the telemedicine approach detect retinopathy with a high degree of sensitivity, but it might actually do so more successfully than a live exam. This, of course, requires that the retinal photos are of adequate quality (good focus, well-centered, not too dark or too light) and that the EyePACS readers (all of whom are certified eye care specialists) are performing up to par. This is why we at EyePACS do continuous quality control of both the photo acquisition and the reading processes. If we detect problems in either sphere, we can provide feedback and advice to the staff members. 

Staff: If you could look into the future, what would you predict will be the status of eye health for diabetes patients ten years from now? And please also explain what factors might drive that future.

Dr. Bresnick: I have been dealing with this problem for my entire medical career - for over 50 years. Although we have made tremendous progress in the technical aspects of diagnosing and treating diabetic retinopathy, the problem will not go away unless a cure is found for diabetes itself. Until then, the threat of diabetic retinopathy requires constant attention. 

Picture4.jpg

This challenge is both structural and personal. We need an efficient health care system to make sure the primary care community and the people with diabetes understand and comply with regular retinal screening - and have the resources to do so. We also need a seamless referral system of at-risk patients and a reliable tracking system that alerts the clinic to all critical stages of follow-up care. But above all, we need the motivation, resources, and understanding to have an effective two-way conversation with patients that guarantees they understand their problem and are empowered with adequate information to make autonomous decisions about how they want to manage their condition. 

Can that all come together in 10 years? Maybe, but I do know that we at EyePACS will devote a substantial amount of our time to help make it happen.