Key opinion leaders provide insight on how OFF episodes affect patients’ quality of life.
Stuart Isaacson, MD: There’s a lot of understanding of why these motor fluctuations emerge and why they can emerge so early and continue to progress over time. It’s certainly a problem for our patients who live with Parkinson disease and rely on this cornerstone oral carbidopa/levodopa to give them benefit and improve their symptoms, but then these OFF episodes occur. How are they a problem for patients? What do patients have to contend with when these episodes are manifested?
Laxman Bahroo, DO: As we defined, OFF episodes are a reemergence of Parkinson symptoms. OFF episodes are intrusive depending on when they occur. They can occur first thing in the morning, middle of the day, or at any point. It can be predictable or they can be unpredictable. My most active patients are the ones who are the most bothered by OFFs. They value their ON time. They understand the meaning of ON time, and they understand how much they can accomplish when their medications are working. Similarly and conversely, they realize that when their medications are not working, as one of my patients said this morning, “I will do almost to anything to get rid of this OFF so that I can get back to my activity.” This is a younger, more active individual, but this logic applies to almost everybody. How bothersome are these episodes? It depends on the duration. How long are these lasting? How frequent are they? You have individuals with severe OFF episodes that are occurring multiple times a day, for 20, 30, 40 minutes, which becomes a significantly bothersome issue. People have quit jobs over this, stopped working, stopped volunteering, and stopped going to exercise classes. People have stopped doing these things because they can’t contend with these OFF episodes.
Stuart Isaacson, MD: How do they affect our patients’ quality of life? What’s the evidence that they actually impact quality of life and are not just a nuisance?
Khashayar Dashtipour, MD: For patients who you are leaving without managing their OFF times, you’re basically leaving them with some tremor, stiffness, and slowness of movement. The irony is that at the same time we lecture our patient that, “I want you to be physically active; I want you to do exercise.” It is completely unfair to leave the patient who does not move well, and say, “Look I want you to do 2 hours a day of exercise.” The whole OFF time is hard for our patients in their activity of daily living. It also affects them in the way we are managing the Parkinson disease as a whole.
I think morning OFF affects quality of life in 2 ways. One is the direct way, in which the patient wakes up and they have 1 symptom of tremor, bradykinesia, or a constellation of the symptoms, such as cramping plus difficulty walking. Then obviously they have a hard time getting up, they have a hard time putting their pants on or shoes, they have a hard time reaching the sink to brush their teeth. They don’t comb their hair, they have a hard time getting to the kitchen, to sit at the table and have a bowl of cereal. All of these directly affect their quality of life, and activity of daily living.
However, the other view that I have is that I look at the OFF time in the morning like a big alarm clock that you have. This alarm comes to you ear and says, “Wake up, you have Parkinson disease.” You basically wake up with this message every morning. This is in contrast to what I want for my patient. I always tell my patient that, “I want you to take control of your Parkinson, know that you are normal, because I’m managing your symptoms.”
But if the patient wakes up every morning with this message, these symptoms mean somebody is reminding you that, “You have Parkinson disease, wake up.” If I can manage the morning OFF and my patients wake up ON, they have more motivation. I want to make sure they understand that we can manage morning OFF, and there are different treatment options. We can change it in a matter of minutes that a patient can be ON and avoid all of these issues.
Stuart Isaacson, MD: Dan, there are many different types of OFF—morning OFF, overnight OFF, wearing OFF, the late ON—which ones most impact quality of life? Do they all? Do some more than others?
Daniel E. Kremens, MD, JD: They all do. It’s not just that the patient can’t move, or the patient can’t get out of a chair, it’s that the patient might have severe anxiety. The patient might have bradyphrenia. The patient might have other of these nonmotor symptoms, so it’s really important to keep in mind that these nonmotor symptoms are really important, and the impact that OFF has on people.
In terms of what are most bothersome, the EUROPAR study looked at a number of different OFFs, and they all had significant impact. But the relative incidence was that early morning OFF had a marked impact on patients and their quality of life as measured by different scales in that study. Although they all can impact patients, morning OFF clearly was rated, at least by these patients, as their most bothersome.
Stuart Isaacson, MD: Thank you all for joining me and for watching this NeurologyLive® Peer Exchange; I hope that you enjoyed the content. Please subscribe to our e-newsletters to receive upcoming Peer Exchanges and other great content right in your inbox.
Transcript edited for clarity.