Practical Considerations in the Management of OFF-Episodes in Parkinson Disease - Episode 10

Role of Patient Education for SubQ and Pen-Based OFF Episode Therapies

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Drs Laxman Bahroo and Sanjay Iyer comment on misconceptions and apprehensions surrounding the use of injectable therapies and the importance of patient education in this setting.

Laxman Bahroo, DO: There are a lot of misconceptions about the subcutaneous plan. Can I do this? Am I able to do this? Who's going to teach me? The educational piece is important. When I bring up the injectable, I can see the apprehension that's twofold, 1 is, It's an injectable? Two is,Who's going to teach me? How am I going to do this? Who's going to give me this? How am I going to learn all this? And it's important to understand that we tell folks: Look, you can inject yourself. The goal is ultimately either you or your caregiver inject yourself. But at the same time, we want to teach you. And the circle-of-care teaching that goes on with this also continues on 3 components. (1), they actually help them understand OFFs are more than what we talk about. We talk about it superficially; maybe we’re doing a dive. Theywill do a deeper dive. They'll actually see them during their OFFs and see what they're like. That's 1. (2), they'll teach them about what the different components are, what this looks like, how to carry it, when to identify how to use the medication, including troubleshooting as well. (3), they become a resource should they have a problem with this either getting delivery or should they have a problem or a question that the nursing team becomes a resource for them in many ways. And many times, patients will come back to me and say, The dosage of 0.2 mg or 0.3 mg used to work. And now it's not working as much. And for the most part, these patients stabilize on a given dose, but sometimes they need a tweak because the OFFs have gotten worse. Many times I'll tell them, I want you to go on this dosage, and no, you don't have to do it alone. You can have the nurse come to your house or observe you virtually doing that dose. Then you get to see the OFF to an ON and what that looks like.

There are more of these issues, but I will tell you the biggest barrier to the subcutaneous is that it's an injectable. And there's more of acceptance of injectables in other fields than there used to be. MS [multiple sclerosis] patients used to have only injectables and they would inject themselves. Diabetics inject themselves multiple times a day on different insulin preparations. Even migraine headache patients have done this. But with Parkinson, I think the population's a little bit more gun-shy of this, plus there are always many, many orals and new orals coming out. It's like, Well, do I have to do this? Could I just not take that other oral once a day? And just see how the field has evolved. I mean, 12, 13, 14 years ago, we had maybe 1 once-a-day at that time, and now we have a sea of once-a-days. It's easy. It's less of a pill burden issue than of adding another adjunct. Many of these are just once a day, but sometimes education of the patient on the adjunctive won't help you, such as if the primary agent, which is levodopa, isn't absorbing. You need something that provides you a levodopa-like ON to be able to go from an OFF to an ON, and you need that to come in quickly, so It has to bypass the gut. That education piece of getting the person to an on-demand therapy is a bridge to cross. And then to be able to differentiate those 3 therapies and find 1 that works for them is another component—then talking about the fact that there's education on using a subcutaneous. It's a lot of education. It may take more than 1 visit; it may take 2 or 3 visits for patients to really wrap their heads around how the OFFs impact them and how they need to move forward in terms of being proactive about it.

Sanjay Iyer, MD: These are great points. I often share with my patients who would be good candidates for the injectable and apomorphine that there's some needle stigma, as I call it. I, unfortunately, suffer from migraines from time to time and they're debilitating. I use the injectable and I don't enjoy injecting myself, but I call that my OFF. When I'm OFF, my head's going to explode. And I think when you relate it to other disease states, people understand: OK, I'm not going to be ostracized for using a needle. I’m not a drug addict.

The stigma is really important to try to overcome. And the migraine is a perfect example on how to do that.

Laxman Bahroo, DO: You call it needle stigma, I call it needle phobia. I completely agree with you in that sense, too, that the needle stigma, needle phobias are sometimes a bigger barrier than anything else. The concern of, how am I going to do this? We had a patient a couple of years ago. I had suggested it to her. In a fashion, I don't typically bring up, but we talked about her level of OFFs, and her husband had called me at 1 point and said “She was stuck in a store and she couldn't move. I know you've talked about starting therapies with a rescue option.” And I said, well, this sounds exactly like something that could be rescued out of. And he said, “Yes, I literally had to get her to sit down in a chair. Then we waited for about 45 minutes. She took her next dose and waited another 20, 30 minutes, and then slowly walked out of the store. And she was mortified that this happened. So many people came to take care of her, but she didn't want the attention.” Not only that, but it was a very big challenge. And now she's not wanting to move out of the house as much. And I said to her, look at all the issues that you're describing. These are all resolvable with subcutaneous apomorphine. This was a conversation probably about 4 years ago that we had, and she was very cheerful that she needed an injectable—that I needed an injectable that I'm this bad off. She came in the next week to see our nurse practitioner and she was tearful at this point about needing this option. We hadn't initiated; we hadn't done anything. We just hadn't talked about it. And our nurse practitioner came and knocked on my door and said, this is tough. What do I do? And I said, let's try something different. We keep a pen pack in our office. Take the pen pack, show it to her. Get her an idea of what an injectable looks like. And within 10 minutes she said “Actually, doing that solved the issue. I showed her how small the needle was. And she was like, oh, this is it? It was an interesting point. We talk about the stigma. It's all up front, it's very mental. And then you show people and they’re like, “Oh, this looks like an insulin pen. I have a friend that injects something similar. OK, this is what it is.” And then that resolves itself. It makes it more personal and friendlier in that sense than what they're imagining it to be.

Sanjay Iyer, MD: People imagine, I'm going to be drawing up medicine through this vial. How am I going to get it right with all the mistakes I can make? And when you show it to them, you're right, it speaks for itself. It's easy.

Transcript Edited for Clarity