A panel of experts shares their thoughts on communicating with patients with mild, intermediate and neovascular age-related macular degeneration about treatment, compliance, and the potential to develop geographic atrophy.
Eleonora M. Lad, MD, PhD: Nancy, going back to communication, as physicians, what should we communicate with our patients? Patients are being treated for mild, intermediate, and wet neovascular AMD [age-related macular degeneration]. We want to give them comfort and appropriate communication tools around intravitreal injections, and we must deal with compliance issues. We also must address the high risk of developing geographic atrophy.
Nancy M. Holekamp, MD, FASRS: I like to say I don’t manage disease; I manage expectations. When someone presents with, say intermediate age-related macular degeneration, hopefully it’s still compatible with relatively good vision, such as 20/20, 20/25, and people aren’t too affected in their quality of life. We go through the Amsler grid, and potentially using the ForeseeHome device, and the risks and benefits of the AREDS vitamins. That conversation, about intermediate age-related macular degeneration, is straightforward, at least in my clinic. We then have the conversation about the risk for coronary revascularization and that’s where the monitoring, either with ForeseeHome or the Amsler grid, comes in. Patients know to call us right away, to be monitoring their vision, and to be vigilant. A key message there is that we’re here for them at the point that they might convert. In a patient who’s already getting injections or is receiving their first diagnosis of wet AMD, a lot of time is spent reassuring them about the injection procedure. My go-to is to try and give the injection the same day, so people don’t go home and worry about it. Fear is the biggest impediment to having these injections. But the person getting injections for wet macular degeneration goes on a very different path with a retina specialist than the person who is older and has not had coronary revascularization but is developing this geographic atrophy. In that conversation, it’s important to use the imaging. David, the imaging that you talked about, my favorite go-to imaging is the fundus autofluorescence, because where the dark areas are on the macula Is what I call the atrophy, or the dead tissue, and you don’t need a medical degree to appreciate that. People can see that they’re losing spots in their macular around the center point of vision, but everybody along the stages of age-related macular degeneration has a different focused conversation for that particular stage. I know we’re focusing on GA [geographic atrophy] today, and I’d like to hear how you educate patients about the GA stage.
Jayanth Sridhar, MD: I love your point about imaging. One of the challenges we have is that some of these patients can’t see the imaging because we’ve dilated them and they don’t have good vision to start with. That’s where you bring in the family member, whoever’s with them, to leverage that, to have someone else. I encourage them to take photos to review later at home and show normal examples. You said a layperson could see the difference between what they have and what’s going on. The other thing is, if they’re getting injections, I like to go back, like you said, and try to get them treatment the first day I see them, and have that constant feedback early on; “How did that injection go for you? Did you feel it? Was it uncomfortable? How was the recovery?” Those are the barriers that will lead to a patient maybe not coming back and getting the treatment they need. Often, they won’t verbalize that to a physician. They feel there’s a barrier there and they don’t want to bring up that there was a problem. If there was, I like to be proactive and ask, “Was it comfortable? Did you have any issues?” and most of them say, “We’re fine.” But occasionally you’ll have that patient who didn’t have a great experience, maybe the anesthesia wasn’t customized for them, and then you must modify things and make sure it’s comfortable. It builds that rapport for the patient to feel, that maybe it wasn’t the best experience but we’re in this for the long haul, and it needs to be for the long haul for it to be successful.
David R. Lally, MD: These are all excellent points that Jay and Nancy bring up. I would add that I also like to try to empower the patient a little bit. In the initial education conversation about lifestyle modifications and what the patient can do to lower their risk of speed of progression of their disease of their eye over time. We know smoking, like Nancy mentioned earlier, is a big risk factor for progression; if you can control your weight, we know that exercise is very important in terms of altering the speed of the disease over time, and it doesn’t alter it in a small manner, it actually has a large effect. There’s been studies looking at greater reductions of risk than their genetic scores. There is power to the patient if they can live a healthy lifestyle and I take a moment to tell them about nutrition and eating a healthy diet. I typically say eat like the Mediterraneans, if you can. These things give a little control to the patient and allow them to feel like they’re not just merciless to their disease, and that they can play some role in what happens to the future.
Jayanth Sridhar, MD: Control is not just an illusion, control has been shown in multiple fields of medicine, if patients feel empowered, then they tend to have better outcomes. So, I 100% agree, Dave. It’s important, and to the point of smoking, I’ve had patients who have gone a lifetime where they could not quit smoking, and this was that moment that they quit, and their family was like, “I have been talking to them for 30 years to quit, and this is what got them to quit.” And I said, “If there’s a silver lining in anything, it’s not great that you have macular degeneration, but we’ll figure that out, but think about all the other health benefits to the rest of your body that we’re achieving here.” That’s true for a lot of conditions we take care of as retina specialists, but for AMD, I’ve seen where smoking is a huge change. This is sometimes that quote unquote come-to-Jesus moment for that patient.
Transcript edited for clarity