Panelists describe the motor and non-motor symptoms of Parkinson’s disease, linking symptoms to OFF episodes, and how to educate patients.
Stuart Isaacson, MD: Dan, you mentioned this idea of motor and nonmotor symptoms. Do you try to link them when you educate your patients and their caregivers on what symptoms first occur? Tremor is often notoriously difficult to link to OFF, because sometimes it can occur just going ON. How do you educate patients who tell you in relation to motor and nonmotor symptoms?
Daniel E. Kremens, MD, JD: I definitely discuss that with patients because we find that many patients have concomitant nonmotor and motor symptoms. Oftentimes the nonmotor symptoms will precede the motor symptoms. It’s common for patients to describe a sense of dread, mental fogginess, and fatigue. Then they’ll note after that, “My tremor is reemerging; I’m having difficulty getting out of the chair; I’m freezing”—things like that. The key is to ask the questions, and they can be open-ended. “Tell me about what happens. Do you experience any strange feelings before you see your tremor?” A lot of times the patient will note the motor symptom because it’s obvious to them, but they may not link the fact that they have this anxiety or dread, or sweat before the motor symptoms emerge. I like to say, “Tell me about a typical episode,” and link it that way.
Stuart Isaacson, MD: Do you tend to rely on some symptoms or usually wearables? How do you educate patients of what they should report to you? Do they keep notes every single day of the month or only a day before they see you? Do you have observing in the clinics?
Laxman Bahroo, DO: We have patients who bring in notes from every single day. I don’t necessarily encourage that, but we use written diaries in some cases, especially if there’s confusion and especially trying to sort out dyskinesia. Plenty of these patients have dyskinesia as well as the OFF-time, and the dyskinesia can interfere frequently with managing the OFF-time, especially with trying to make longer-acting medications.
We use written questionnaires sometimes, but it’s largely based on interview. I haven’t started to use wearables in clinical practice. We do that in research, but I’m not sure if people are doing that clinically yet.
Stuart Isaacson, MD: How is the diary used in research programs? Are there symptom diaries that patients can check off? What types of diaries do you use?
Laxman Bahroo, DO: Symptom diaries are probably the easiest ones where you can check off a symptom when you experienced it, and write down when you have symptoms and what it looks like. The simple diaries downloaded from the Internet have a 24-hour clock at the top, and you can edit it if you need to by checking off the medication and writing down the medication you took, for the most part some form of levodopa preparation. You can write down the other ones, but many of those are moved to once a day. You check off when you take that medication and eat—you can put M for meals, and O for OFFs. Extra medication is O for OFFs and M for meals.
They can take 3 or 4 days’ worth of that information and give it to me, preferably on 1 or 2 sheets that I can review quickly, so that I can see across multiple days. But there’s something between diaries and wearables that we haven’t discussed. Wearables are something kind of the promised land that’s coming up, and hopefully we’ll have the ability of it outside of research and diaries.
Videos are typically underutilized. Almost every 1 of our patients has a cell phone with a camera. If they’re not sure what OFFs look like, I want to see what OFFs look like. The same thing applies to tremor, though that’s beyond the scope of our conversation. When you say he or she has bad tremors, what does that mean? My definition of that is different from yours. I ask them to do a specific maneuver to find out when the individual is having an OFF. I have the house or caretaker do a get-up-and-go test.
I want them to sit in a chair and get up from that chair, go across the room and come on back. I want to see what that looks like during an OFF so that I can say that it’s an OFF, unless it might be obvious that it’s an OFF. Then video when you feel the medication is working well, and we can compare side-by-side, and I get to see exactly how difficult it is.
The main limitation is that you may have videos that show only part of the view. They may not be good-quality videos. A little education can help with that. The videos may just be motor based. Nonmotor components don’t get captured as much on videos.
The other thing I encourage is getting one or two 30-second, 1-minute videos to help illustrate how bad your OFFs are, because when we see patients in our office, the majority of the time they’re ON. The only times they’re OFF is when somebody else is taking care of their medications and responsible for their transportation. Virtual visits have given us a little more of a window, but 80 percent of my patients who complain about OFFs show up in the office ON.
Stuart Isaacson, MD: Thank you all for joining me and for watching this NeurologyLive® Peer Exchange. I hope you enjoyed the content. Please subscribe to our e-newsletters to receive upcoming Peer Exchanges and other great content right in your in-box.
Transcript edited for clarity.