Are We Preventing Diabetic Blindness?
Thursday, July 16, 2015
Jorge Cuadros, OD, PhD, University of California, Berkeley and EyePACS, LLC
Editor's note: Dr. Cuadros will present data on a Washington diabetic retinal screening project at our Fall Primary Care Conference in October.
When is technology simply not enough of a “solution” to truly solve the “problem”? When the problem is rooted in the psychosocial aspects of non-adherence.
My business is diabetic retinal exams through telemedicine – simply, placing cameras in primary care clinics to capture retinal images of diabetic patients when they come to see their primary care providers. It’s effective technology placed in the setting most likely to detect and prevent the world’s leading cause of adult blindness among the highest-risk population. And it works beautifully – except when it fails to prevent vision impairment!
I don’t worry about the camera or the certified photographer who was selected from among the existing community health center staff. I don’t worry about the picture archive communication system or the quality and timeliness of the expert readers of the images. And I don’t worry about the patient with diabetes looking into that camera, pausing as eight images are captured before going to get blood drawn or visiting with the diabetic educator or getting a foot exam. That patient is doing well and likely has minimal diabetic eye disease.
Of concern is the diabetic patient who’s not looking into that camera until symptoms appear, and not receiving timely treatment for diabetic eye disease. Several studies reveal that the patients with diabetes at greatest risk of blindness are less likely to have a retinal exam as recommended and least likely to comply with indicated retinal treatment, if sight-threatening retinal disease exists. And it’s not a problem only in the U.S. A 2013 study in Beijing found 55% non-adherence with recommended retinal treatment when sight-threatening retinal disease is discovered. Several other similar results have been noted in other international studies and in our own work abroad in Mexico and Africa.
The problem is not lack of awareness. A 2012 study in a residency-based patient-centered medical home found that, while digital retinal imaging (having a camera in the clinic) dramatically improved retinopathy screening rates, it did not improve visit compliance for ophthalmic treatment. In other words, even when a patient with diabetes is told she might become blind, in many cases she still will not go to see the eye specialist.
The diabetic patient at greatest risk to lose her sight is the one least likely to follow up on a referral to an eye doctor, least likely to even agree to the retinal camera imaging in the first place – probably even the least likely to appear in the clinic for regular diabetes management care. She’s probably also among those least likely to manage her diet well, exercise appropriately, and do all the other things her diabetes educator once recommended. In short, all the efforts to improve access to health care for one of our most vulnerable populations sometimes appears not to matter.
And that’s discouraging.
A couple of countries in the world have great compliance with diabetic eye disease treatment and so they have very little diabetes-related blindness. In one country it’s against the law to be at risk and not show up for the recommended treatment. If a patient fails to show, a visit is made and the patient is obligated to receive treatment. Cuba has shown that early detection and treatment clearly reduces blindness from diabetes. The other country is Iceland, where the few hundred patients with severe retinal disease are intensively followed to avoid complications.
Enforced health care is certainly not an option for the U.S. But where is the happy medium? Where is the place where medicine’s best practices can intersect with a patient who has not found both the commitment to stare down this disease and the personal wherewithal to make the hard decisions, day after day?
A vicious cycle of non-adherence with eye care continues to contribute to diabetic vision impairment. It works like this: The patient waits until visual symptoms arise before visiting an eye care provider. Visual symptoms usually arise when diabetic eye disease reaches an advanced stage.) Trying to save the eyes at that stage results in poor treatment outcomes. Now the patient mistrusts the treatment, because it didn’t work. He communicates that disillusionment to others in the community, and they may then believe the system cannot help them. Non-adherence is reinforced and worsens in the community.
Figure 1. The Vicious Cycle Of Non-Adherence
The “rules” for diabetes management are everywhere. Virtually any patient with diabetes can easily become familiar with the mantra: At each visit with your provider, have your weight, blood pressure, and feet checked, and review your self-care plan. Twice each year have your A1C level checked. Once each year have a dental exam, eye exam, complete foot exam, flu shot, urine test and cholesterol test. And through it all, eat the recommended healthy diet, exercise regularly, learn to control stress, and quit smoking. This advice is available almost anywhere a patient might care to look. Still, seen all together in one paragraph, that’s a lot for a patient to manage.
Our work in caring for patients with diabetes involves the latest technology, the latest software, and groundbreaking innovations in well-established health centers.
It’s a psychosocial problem that defies technology and scientific innovation, but surely it cannot defy the collective will of healthcare professionals around the globe. I look forward every day to encountering fellow clinicians that will join me in a determined effort to solve this problem of noncompliance with treatment.
In the coming year we will perform several trials to explore patients’ compliance with referrals for diabetic retinopathy treatment. We know that several clinics do a great job in “closing the loop” in retinopathy screening and are able to motivate their patients to either control their blood sugar or get timely treatment for sight-threatening retinal disease. We want to learn from these clinics and really get our heads around this problem. We applaud and admire all of the clinics who have successfully implemented diabetic retinopathy screening. Now we just want to make sure we are actually helping to prevent blindness.
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