Patient and Cross-Care Education Strategies for AMD and DME

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Experts discuss strategies for educating patients, fellows, and shared-care providers on therapies and prospective outcomes for patients with age-related macular degeneration (AMD) or diabetic macular edema (DME).

Transcript

Ehsan Rahimy, MD: One thing I love about these get-togethers is the anecdotes you can take home in terms of how these conversations go with patients. I need to have these types of conversations with patients once or twice a year, depending on the patient, because the fatigue sets in. They start questioning why they need this, they are not getting better anymore, or they’re getting worse. What are some of the pearls? What are you saying to patients or their family members that our audience can take home and try using in their own practice?

Jonathan Jonisch, MD: Veeral, take it.

Veeral Sheth, MD, MBA, FASRS, FACS: That’s a really important point. I’m sure you agree, but in that first conversation, the patient probably hears 10% of what you tell them. I understand that. You’re telling them they’ve got a severe disease that could lead to blindness and that you may have to give them an injection. If I were that patient, as soon as you say injection, I don’t listen to any other words you say. All of us have had experiences where we’ve given a clear message up front, but we’re prepared to give that message over and over. You’re right: there are different points for different patients where you have to reinforce it. For a lot of patients, once they’ve hit that plateau, [they ask], “Why do I have to keep going on with this?” For those of us who’ve started treating GA [geographic atrophy], it’s even more significant because the vision changes aren’t as significant and noticeable for our patients. This is an absolutely important point.

Jonathan Jonisch, MD: It’s a bit nuanced. I have a different conversation with my patients with diabetes than I do with my patients with AMD [age-related macular degeneration]. One pearl I give my patients with diabetes is that we have a treatment to reduce blindness due to diabetes, and what you have to do is show up and allow the medicine to work. Our data show us that if you’re compliant with our treatment plan, you have a very good chance of maintaining good vision throughout your life. The patients who I see lose vision almost invariably are ones who came in too late, or they disappeared from their treatment plan. For patients who are consistent, our drugs are so effective in reducing the diabetic retinopathy severity, diabetic macular edema, and proliferative disease. Patients who remain adherent do really well.

AMD is slightly different because despite our treatments, patients can still have vision loss down the line. Some patients are older and more familiar with chronic treatment. I try to give an analogy to blood pressure medicine. Blood pressure medicine brings down your blood pressure, but if you stop taking it, it’s going to go back up. Many patients understand that algorithm. It’s a bit nuanced, and it’s a bit different for every patient. It’s always interesting to know what they take home.

Ehsan Rahimy, MD: Ali, how about you?

Ali Khan, MD, FACS, FASRS: I agree with everybody. If the referring doctor mentions that the way we give this medication is with an injection, that breaks the initial shock, so that when they come in the office with you, you’re not the first doctor to tell them this is how we give the medication. That’s super helpful. Otherwise, 1 thing patients are most worried about is that they are going to get these injections for a long time.

I reassure [patients] that my plan is to give them as few injections as I possibly can. Then I show them their OCT [optical coherence tomography] images. Sometimes it goes over their head with discussions about what exactly is macular degeneration or retinal vein occlusion. But if you show them [their picture] and what a normal picture looks like, they naturally get it. Showing their picture to prove to them that something is working, and then explaining that I’m trying to give the least number of these as I can but trying to protect your sight long term, has worked for me.

Veeral Sheth, MD, MBA, FASRS, FACS: Ali brings up a good point. Feedback is important for all of us, especially once you start hitting that plateau. Why are you treating me? Why are you injecting me? Showing them the OCT is such a valuable tool, and it helps compliance and follow-up.

Ehsan Rahimy, MD: That’s a great point.

Ali Khan, MD, FACS, FASRS: Treat and extend works well in the setting, especially once you reach a plateau: “You look good. Now we’re going to go longer.” They understand that. That’s what’s worked for me thus far. Sometimes it depends on the patient and the disease [to determine] which conversation you need to tailor, but once you build a rapport after a couple of injections and realize it’s not so bad, then things settle down.

Ehsan Rahimy, MD: Ali, you brought up a great point about priming your referral base, at least the doctors who get to know you over time, to at least introduce the concept of an injection. That way, when you’re seeing that patient for the first time, their eyes don’t glaze over when you mention it. I found that, especially on the diabetes side, that works well because not every time am I even initiating treatment on a patient with DME. If it’s something that we agree can be monitored, that patient is so happy they didn’t get an injection that they feel more motivated to take care of themselves. This is often where we’re telling them we’re doing shared care with your optometrist or ophthalmologist. But if it gets worse in the future and you come back, then we’ll start therapy. I’ve been around long enough to see patients come back 3 or 4 years late, and something did get worse. At that point they’re saying, “Doctor, you were right. You told me about injections, and I’m ready for it. Let’s go for it.” It was so much smoother than if you’re the first doctor telling them they’re going to need an injection. That’s a great plan.

Veeral Sheth, MD, MBA, FASRS, FACS: There’s this “Goldilocks zone,” as far as what information they’re given. For patients who aren’t given any information, some don’t end up coming to you. They don’t understand the importance of the referral and why they’re coming to you in the first place. But then you have patients who’ve been potentially told too much information, and you have to re-educate and walk some of this stuff back. Patients with diabetes come in, and we may not treat them right away. We may say, “You have 20/20 [vision] with a little of edema. Let’s watch it.” There’s that middle ground, but it all goes back to what you were mentioning, which is talking to referring doctors, educating them, and then going back to them and giving them feedback.

Jonathan Jonisch, MD: That’s a great point. I have some referral doctors, and they bring up the forever question. They come in and say, “The doctor said I’m going to need injections for the rest of my life.” It’s a difficult question when they ask, “How long am I going to need treatment?” We never know exactly how long the duration is. I tell my referring doctors that not everyone is on these treatments forever, and that a lot of patients are able to exit at some point, but some aren’t, but we can’t tell off the bat.

Ehsan Rahimy, MD: That’s a question we get posed a lot. I’ve become fond of saying it over and over. I just say “forever for now.” That imparts a message of hope. In clinical trials, we’re moving toward longer durability—maybe something self-sustaining for a long time, like gene therapy. But it lets the patients know they’ll need it for the long term for the time being.

In terms of motivating factors, especially on the AMD side, we all have patients whose inherent fear is they know a loved 1 or a family member who went blind from the disease, but they’re not vocalizing that to us. When I get to the point where we’re having the why-am-I-doing-this-therapy conversation, I’ll try to take a step back and make the patient appreciate the timeline. It’s helps them realize, “You don’t have any perspective here, and I don’t expect you to. But 15 to 20 years ago, you’d be blind right now.” They’re not because of what we have, and I have no doubt that in 10 to 15 years, it’s going to be a lot better than it is today. We’ll look back and say, “What were we doing back then?” But we’re fortunate and lucky to be around at a time when we have great therapies to prevent them from losing their vision. You’ve just got to show up.

Veeral Sheth, MD, MBA, FASRS, FACS: That applies to our trainees. I find myself putting that information out there for our fellows and residents because they’ve come up in a world that knows therapeutics for these diseases vs when we were starting or in training or going into this field, neovascular AMD had no good treatment. We had ways of pausing the disease or preventing patients from falling off the cliff, but we had nothing to make them better in the long run that wasn’t disruptive. Giving that perspective is important, especially to patients and anyone in our field.

Ehsan Rahimy, MD: Veeral, there’s a third class of patients you didn’t mention: Northern California patients who show up with all the clinical trials printed out. We get those too.

Veeral Sheth, MD, MBA, FASRS, FACS: Google is a double-edged sword. It’s got good information, but you can get into deep, dark rabbit holes. [There’s also] a lot of outdated information. So I agree.

Transcript edited for clarity.

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