Catching DME Patients Before They Fall Off the Radar: Sunir Garg, MD

The burden of treating diabetic macular edema (DME) extends far beyond injection frequency, encompassing copays, transportation barriers, dilation-related vision disruption, and the cumulative weight of managing a chronic, systemic disease. If left unaddressed, these factors quietly erode adherence before a clinician ever realizes a patient is slipping away, according to Sunir J. Garg, MD, FACS, FASRS, professor of ophthalmology at Wills Eye Hospital and Thomas Jefferson University and partner at Mid Atlantic Retina.

By the time patients present with DME, they are typically already burdened with a slate of comorbidities—kidney disease, neuropathy, and cardiovascular disease—and navigating a health care system that rarely makes accommodations for hourly workers who cannot leave their shift or patients who cannot drive after dilation. For these patients, the 8 or 9 annual retina visits required in the first year of anti–vascular endothelial growth factor (VEGF) therapy land on top of a calendar that may already include a dozen or more appointments with other specialists.

In an interview with The American Journal of Managed Care^® (AJMC^®), Garg discussed how he builds adherence support into the first visit, how his practice identifies patients beginning to pull back, and what it takes to keep working-age adults engaged in a treatment regimen that demands years of sustained commitment.

This interview has been lightly edited for clarity.

AJMC: DME disproportionately affects working-age adults managing an already demanding chronic disease—diabetes. How does that patient profile shape the way you think about treatment planning from the first visit?

Garg: It definitely affects how I approach patients in a couple of different ways. By the time a patient comes in with significant diabetic retinopathy, whether that's DME or proliferative diabetic retinopathy, they've had diabetes for a while. Moreover, their diabetes and blood pressure control have not been optimal; otherwise, they wouldn't have the retina findings.

We know that by the time patients have retina problems from diabetes, they're probably also having kidney problems, or diabetic neuropathy, or heart problems, or all of them. The number of times that patients need to go to doctors in general—not just to us—is really a lot. Even though we might think, “Well, over the first year, if I'm giving anti-VEGF injections for DME, you may only come in 8 or 9 times and less after that.” But those 8 or 9 visits are on top of an already 1 or 2 dozen other doctor visits, and it becomes a huge burden for working-age adults.

That matters, because for most people, trying to get to the doctor during a workday is really hard. Most retina practices don't have evening or weekend hours, so patients have to take time off work. Anything I can do to help minimize that—whether it's scheduling them for the first or last appointment of the day, minimizing how often I dilate them, or trying to get them on medications that get them dry and keep them dry—is something I talk about up front, so we can figure out what's important to them, what their needs are, and what I can do to help get them there.

AJMC: Injection frequency is the most obvious driver of treatment burden—and you did explain the number of doctor’s visits, not just with you but with others can be a burden—but what are the less visible burdens that often push patients toward undertreating or dropping off?

Garg: Copays are always an issue. You have an office copay and often a drug copay, both of which are real burdens. Some of our offices are in urban environments, so if they don’t take public transportation, they may have to pay for parking. For patients who have limited vision due to their diabetic eye disease, getting to the office can become a problem. When I go get my eyes checked, I just hop in the car and go. But if you have vision problems, driving into the office isn't always possible. After treatment, sometimes patients have trouble seeing clearly enough to drive home. Those are all potential points of friction—some of which we can work around, some of which are harder.

Being cognizant of all of those and asking patients, "What can I help with? What's the sticking point for you?" is really helpful. What I think the big issue is may or may not be what's actually bothering them. For some patients, the issue is the dilation. They work on a computer all day, and if they're dilated, they can't see the screen for 6 hours. So, we figure out ways to minimize that. Asking the patient where the burden is, as they're experiencing it, can be very helpful.

AJMC: There is a real-world gap between how often patients should come in and how often they actually do. When do missed or delayed treatments begin to meaningfully affect outcomes, and how do you communicate those stakes without alienating patients?

Garg: We know that if patients have proliferative diabetic retinopathy and miss 6 months or more of treatment, the proliferative disease will often become active again. That can really affect people's vision, either through vitreous hemorrhage or tractional retinal detachment. When patients have a year or more of missed treatment, particularly if they're on anti-VEGF monotherapy for proliferative disease, a reasonable number of those folks will end up needing a vitrectomy. That matters a lot.

For a patient with DME, the edema tends to be more forgiving if there’s a missed visit. If they were supposed to come in every 2 months but it's been 4 months, and their vision has gotten worse because the edema returned, I can usually get that back under control without a ton of effort. It might mean an extra injection or 2, but that's usually achievable. That said, we do know that if patients have a prolonged pattern of getting better, then worse, then better, then worse over 1 or 2 years, that it will have some detrimental effect on vision. We don't want that seesaw to happen. We want to get them good and keep them good and figure out ways to help them adhere to a schedule that works for them.

I try not to do any shaming because I know life happens. They have kids, they have parents, they have jobs, or they have other health issues. I just try to ask: “I noticed we weren't able to meet for our last appointment, and it's been 6 months since we were last together. How's your vision been? What's been going on during that time?” That helps me understand what their needs are, and once I understand their needs, I help the best I can. If they got hospitalized because of heart disease, I want to be respectful of that, and it may give me a marker that their diabetes might be damaging the body more than I appreciated. Or if it's, “I lost my job, I don't have health insurance, and I couldn't come in,” then that's important for me to know as well.

AJMC: When a patient starts pulling back by spacing out appointments or pushing back on injections, how do you catch that, and what does your practice do to intervene before it becomes dropout?

Garg: Part of it is just asking them. You hear them complain, and you ask: what's bothering you? Is it the needle poke? Is it the after-effects? Is it coming into the office? The cost? Usually, patients will tell you. They'll say, for example, "Afterwards, my eyes are really burning for the rest of the day, and I have to go home and lie down with my eyes closed in a dark room." I can help with that—rather than using povidone iodine, maybe I use chlorhexidine, or a topical non-steroidal drop, or I rinse them. Maybe I'm more careful about how much antiseptic I put on the corneal surface.

If they’re having trouble getting transportation and maybe they only have a ride on Tuesdays at 8 AM before their adult child has to be at work at 9 AM, then I'll try to get them my Tuesday appointment at 8 AM. If copays are the issue, I try to work with that. Those are achievable fixes.

If it's simply, "I hate getting needles in my eye,” well, that's understandable. I'll have patients at home cover each eye separately, just to get a sense of what each eye is doing. Most patients will start to notice that their vision isn't so good for reading or driving. After a visit or 2 of saying they don't really need treatment anymore, when those patients start losing vision and losing their ability to drive comfortably, they typically come back and adhere to their visits.

For other patients, I use the OCT [optical coherence tomography] to educate them. “Here's where your pictures were when we started, here's a normal eye, here's where you are today, and our goal is to keep it like this. Remember when you first came in 9 months ago, and you were barely passing the driver's test, and you couldn't read your cell phone, and your images looked like a wet, boggy mess, and now none of those things are true? You don't want to go back to that.” Most patients will say: “I don't want to be here, but whatever it takes.”