Drs Laxman Bahroo and Sanjay Iyer discuss common challenges in identifying OFF episodes in Parkinson disease, the importance of patient education, and utilizing symptom tracking diaries.
Laxman Bahroo, DO: There’s a small portion of patients who may never experience OFF episodes up front. They’ll tell you, the first time they have an OFF, they’ll explain it to you, and you may not understand it, because their explanation may be more convoluted. I believe that nonmotor OFFs are probably the more challenging ones, because we’re not sure if they’re genuinely having a nonmotor OFF, or if there’s something else going on at the same time. The recurrence or the repetitive nature of it will make more sense, if this happens at the end of a dose or after they’ve taken a dose. There are challenges to identifying OFFs, and as Dr Iyer said, education is certainly one of them and being able to tell patients to be mindful of their OFFs and figure out what’s causing some of their episodes. What do you think are the challenges of identifying these OFF episodes?
Sanjay Iyer, MD: As you said early on, people don’t know what to expect. “I have Parkinson disease, and my hand is shaking, what’s going to happen tomorrow? Is this going to be a fast progression or a slow progression? Is it a good day or a bad day?” Often, they don’t know what to expect when they take their medication, what’s supposed to get better. Some of the challenges are that life gets in the way, people are living their life, they’re trying to do their job, they’re trying to take care of their family. They may not be very self-aware about what’s happening from moment to moment. We need to explain to patients that we need to look at the timing of your medication and track anything that you’re feeling in relation to the last dose of levodopa or the next dose. Is it a phenomenon of too much or too little, or what’s going on? Generally, it’s hard to track symptoms because people are also trying to live their life.
Laxman Bahroo, DO: I agree completely, and it’s difficult to be able to track some of those things because people may experience them in different amounts. There are some individuals who may experience OFFs that are smaller in parts of the day, other times they may experience more severe OFFs. Often that depends on when their medications are taken, when the most active time of their day is. People may experience OFFs in the morning, the middle of the day, and at the end of a dose, at the beginning of a dose, the middle of a dose, and that makes it very difficult to be able to track it. There are several different things we can talk about, things to track it.
I like to evaluate OFFs in several different ways. One thing is I ask questions, and this must be done in an open-ended way, “Have you ever taken a dose that’s delayed? Have you missed a dose, what happens?” And many times, people are reluctant to admit that they take doses late or they miss a dose, they don’t want to admit it. And let’s be honest, if we had to take something 3 times a day, we would miss doses. I know, because I’ve had to take something 3 times a day, and I miss doses, we all do. Three times a day, 4 times a day, many times I’ll ask patients, “What happens when you miss a dose, or if you take it an hour or two late“? Sometimes they’ll say, “nothing.” I think, good, they don’t have OFFs. Or they tell me, “No, 30 minutes later I started noticing more tremor, and I was wondering why, and I realized I hadn’t taken my 12 o’clock pill, and it was 12:45.” And I’ll say, “OK, so this is what your OFFs look like.” In many ways, people will figure this out themselves.
My goal is to elicit that information to keep it in my data bank and in the notes for what happens because when they do have more OFFs, and they’re describing them, I want to be able to rely on this information. But many times, the conversation is simple, and talking about when they miss a dose, how bad is it, what symptoms appear? Many times, they might tell me that, “Not only did I get tremor, but I started getting more sweaty, I got more flushed. I felt like the lights were turning off, things were getting darker.” There’s an affect component to this as well many times. Combined motor and nonmotor OFFS are not challenging, it’s the purely nonmotor ones that are more challenging.
For the folks in whom there is more of a challenge, I oftentimes will tell them, “Look, maybe a symptom diary might be your friend. I’m not sure what these symptoms are, I’m not sure if they’re related to your Parkinson disease. I’m trying to probe and ask questions to see, is it related to the medication, is it the end of a dose, is it the beginning of dose? And you’re giving me answers like, sometimes it’s here, sometimes it’s there, and maybe there is no pattern to it. Maybe that is the variability of it, or maybe there is, here’s a symptom diary.” Many times you can download symptom diaries from the internet. We keep one that pretty much covers a 20-hour day. Patients mark off the doses they take at the times, and then they log whatever symptoms you want, whether you want them to track dyskinesia, whether you want to track OFFs. Typically, it’s OFF, and I want them to track their food. What do you think about diaries?
Sanjay Iyer, MD: Diaries can be very helpful if people are organized and can follow and complete them. The 2 situations I struggle with are when the OFF is related to anxiety, and another is fatigue. Those are 2 situations where, is it part of their OFF manifestation, or is this a separate symptom related to their Parkinson disease? Again, getting back to just tracking, what time does that happen? Is it always when your medicine is due? Is it always at this situation? But it’s easy to overlook those nonmotor symptoms and just blame it on, well, Parkinson disease causes a lot of things; it may be related to the timing of their medication.
Laxman Bahroo, DO: Absolutely. I’ll say one more thing, what you said was very spot on, accurate. One thing we need to realize is the diaries have a bit of a beneficial effect that we may not realize. You give the diary to a patient, we give them maybe 2 sheets of paper, say fill in 3 or 4 days. One caveat, if you’re planning to use diaries, understand that the Parkinson disease population can be a little obsessive. You may want to tell them, “I want you to keep track of maybe about 4 or 5 days,” because a patient may return with 14 days of data. If they have 14 days of data, you’re not going to be able to see it. I want to be able to see a pattern, but I want the signal-to-noise ratio to be in my favor in seeing if there’s a pattern. If you bring me 14, 15, 16 days, I might not be able to see it as much, or as easily; it’s a lot more data to go through.
Now what’s interesting is, sometimes I’ll see patients, they’ll mark off a dose at 2 o’clock, and they’ll make a notation saying, “Look, the dose was taken late.” I’ll say, “I see your dose was supposed to be at 12, you took it at 2, and I see from 11:30, you’ve been marking Os for OFFs all the way through. And guess what, you took it at 2, and OFFs continued till 3 o’clock, you had almost 3 hours of OFF time.” Part of that was what I call self-inflicted, in the sense that if you take your dose at 12, you may have had a shorter amount. The diaries have a corrective effect on folks, they realize exactly when they’re eating, when they’re having to take their medications, what the relationship is. Sometimes they say, “Look, I took my food at 12 o’clock, I took my medication at 1, it didn’t work till 2:30.” And I’ll say, “See, exactly. Now that you’ve marked it off, you believe this, what we’ve been telling you, which you may or may not be willing to accept.”
So there’s a corrective effect of diaries, but I take that with the fact that the patients have to be willing to fill them out. I think Dr lyer is completely correct, if you don’t get good data, you may not get good outcomes from that. That’s why I tell folks to keep it for 3 or 4 days, a couple of days this week, a couple of days next week, and then then come back to us, and we can review them. Incidentally, I don’t know about Dr Iyer, but I certainly review these diaries, sometimes through our portal system, and I’ll do a virtual visit with them. They don’t have to bring diaries back to my office. I tell them, “You can send me the diary, the pages of it, virtually, the day before. I’ll review it at our visit, and we’ll talk about it and we can have a conversation, because the next changes we’re going to make are based on the diary data. And I’ve already examined you a couple of weeks before anyway.”
Sanjay Iyer, MD: It’s also good to be able to leverage a care partner, a spouse, a friend, a loved one. And I’ll often give them a diary and say, “Why don’t you fill these out together because the patient’s perception of whether they’re ON or OFF may be different.” A wife may notice, he’s dragging his feet now and he’s not walking well, whereas a patient may not realize that. I like to involve as many eyes as I can in the process.
Laxman Bahroo, DO: Absolutely. And many times, if the patients are not aware, diaries are a challenge.I’ll tell them, “Videotape what you feel is an OFF and just show that to me,” with the understanding that I’m going to get 1 or 2 videos of this, maybe about a minute or so long, that shows something like them getting up out of a chair and going. Then I typically tend to see them ON. Almost invariably, when individuals come to our offices, they’re almost always ON. In that sense, I’ve jokingly called a virtual visit a truth serum for many patients. I tend to see patients OFF because they didn’t take their medication this morning because they didn’t have to go anywhere. They forgot to take their dose, or they took the dose and it was the bad time of the day, whereas normally they would have canceled the appointment. But today, they didn’t because it’s virtual and they would sit right at home. But they’ll tell me, “Look, I’m having an OFF day,” and so to an extent, virtual is a bit of a truth serum in that sense.
Sanjay Iyer, MD: The situation of early morning OFFs is always important to discuss. Because we all, as we get older, my back hurts when I wake up in the morning, I’m sore, I’m stiff. But understanding that may be a difficult time for a lot of people, where they’re extremely slow. In the morning it may take quite a while for their first dose of levodopa to kick in. That’s a situation I try to educate the patients about that time and say, “Do you really notice your Parkinson symptoms a lot more, or is it just your back’s a little sore and stiff, like mine is?”
Laxman Bahroo, DO: That’s an excellent question to ask because it is the longest interval from their nighttime dose or evening dose to the next morning’s dose. If they’re going to have OFFs, they might have morning OFFs in that sense.
Transcript Edited for Clarity