Let’s say you image the retinas of a long-term diabetes patient, and your EyePACS reader advises that signs of Vision Threatening Diabetic Retinopathy (VTDR) are clearly present in the images, and recommends referral to an ophthalmologist in, say, one month. You contact the patient and set the wheels in motion to help this patient get the appointment. From there, the patient follows up and begins the sight-saving procedures that will prevent blindness, right?
Unfortunately, according to a study we conducted several years ago, only about 23% of patients with VTDR actually saw a specialist and received treatment or follow up. (We are currently working to update that study.) Why? Because many patients dealing with a multi-faceted disease like diabetes face a cascade of issues: conditions and determinants that can create insurmountable barriers to taking the next step in their own care.
The dictionary defines “cascade” as a series of shallow or step-like waterfalls... seeming to flow or fall in abundance. A recent study by EyePACS, Google Research, and medical anthropologists from Southern Methodist University and the RAND Corporation concluded that “cascade” is exactly the image healthcare professionals should keep in mind when addressing patients who have signs of VTDR. “Diabetic Retinopathy and the Cascade into Vision Loss,” published in Medical Anthropology in late March 2018, begins with the assumption that vision loss is a catastrophic event and an unnecessary one, even for people with diabetes. This team of researchers, including both the CEO and Medical Director of EyePACS, interviewed VTDR patients in their homes and the clinic staff who interact with them. They concluded that the multitude of social and health problems, interacting with each other, often make follow-up specialty referral and DR treatment a very difficult task.
What, exactly, does this “cascade” include besides diabetes itself? Multiple other conditions (such as kidney and heart disease) that need medical attention, depression, social isolation, and competing responsibilities, to name a few. Patients observed and interviewed often seemed to have difficulty obtaining their medications or taking them properly, finding the stamina required for scheduling or attending dialysis and other treatment appointments, and making good decisions about food and exercise due to dizziness, weakness, foot pain, or other disabilities. Add to that family obligations, work schedules, lack of support, language barriers, and reduced mobility, and the cascade takes over the patient’s life. It’s easy to see how this can make it very difficult for patients to follow the recommended referral to an eye care specialist and adhere to eye treatment, even though loss of sight is often what our patients with diabetes fear the most.
And, if vision actually becomes impaired, the cascade of issues can be even more overwhelming – not only to the patients and their families, but also to the healthcare providers themselves. In addition, when delay in treatment of DR leads to visual symptoms, the treatment is less effective in preserving or improving vision. Thus, we must ask ourselves, how can we get our patients into timely treatment before vision is irreversibly lost?
Our researchers observed telemedicine screenings in three high-performing safety-net clinics to better understand the screening and specialty referral processes. They found little accessible take-home informational materials, insufficient two-way communications with patients regarding diabetic retinopathy and its treatment, and little time devoted to overcoming barriers to follow-up appointments. Shortcomings in the scheduling system for eye care visits were often cited by patients and staff alike as barriers to further care. Some patients were advised to call about their screening results if they hadn’t heard anything within a few days – but were given no name or phone number to call.
How is it in your clinic? Do you have clear data about how your patients with sight-threatening disease adhere to specialty referral and treatment recommendations? If, despite all your efforts to prevent diabetes-related vision loss, this “cascade” is the reality, what can a primary care clinic do? At this point there is no simple solution. There are no templates for ensuring that patients referred for specialty follow-up actually get the care they need to prevent vision loss. According to Dr. Jorge Cuadros, OD, PhD, CEO of EyePACS, the best thing clinics can do at this point is to collect reliable data on what happens after the screening process, what the patients referred for follow-up actually do, and what efforts are being made to improve the patients’ chances of getting sight-saving care. “Our research continues,” said Dr. Cuadros. “This data is difficult to obtain and track. The problem is exacerbated when clinics assume their referrals are being completed.”
Dr. Cuadros continued, “The primary care clinic will ultimately be the place where diabetic retinopathy will be stopped in its tracks. Lack of adherence with eye treatment, however, is a problem that is largely unrecognized and, for correction, requires support from eye care professionals, social services, public health, and the community in general. We need to grow this conversation and continue to work together to reliably link early detection with sight-saving treatment. Otherwise, what is the point of screening for retinopathy?”
Do not hesitate to get in touch with us if you know or discover that your clinic has similar problems. Given what we are finding elsewhere, it is very likely that many clinics share a similar challenge. By working together, we can also share solutions that seem to be working. Send us your recommendations and tell us about your solutions: 800-228-6144 or contact@eyepacs.org. Read the entire report here.
