Raising Awareness of OFF Episodes in PD


Drs Rajesh Pahwa, Robert A. Hauser, and Laxman Bahroo assess the awareness of OFF episodes in patients with Parkinson Disease and comment on improving education and awareness among non-neurology clinicians and other health care providers.

Stuart Isaacson, MD: Raj, how do you assess if your patients and their families or caregivers are aware of OFFs, and how about other clinicians that you talk to you? You lecture quite a bit. How do you assess where the clinicians are aware of OFFs, and how do you counsel them on how they can best elicit OFFs, especially the impact of OFFs?

Rajesh Pahwa, MD: We all are very busy in the clinics. We all would like to spend an hour with each of our patients and go through each of the motor and nonmotor symptoms that they may be having, but unfortunately, we don't have that kind of time. Unless the patient knows what OFF time is and what ON time is, and what good ON time is, they're going to come and say,” I'm freezing. My legs feel like lead all the time.” That's where someone who doesn't quite pay attention to OFF times may not be able to appreciate this patient is having OFF time during the day. The simplest thing is to ask the patient, “How is your day going? Are there times during the day that you don't function well? What happens?” Having said that, we need to think about it. Like Bob brought up earlier, the tremor may change during the day. The patient may get anxious, and the tremor is worse. This doesn't mean they're having an OFF. Patients may get some orthostatic symptoms and feel like they are weak and tired and cannot function. We have to separate those from true OFF time that the patient may be having. The important part is we as clinicians must educate a patient, and like Laxman said, right off when we start levodopa. To me, when I have a patient, I start them on levodopa. They come back with a big smile. I know the patient has had a good response, so you’ve got to remind them, “This is your good time. This is what ON feels like.” Then at every visit, asking them, “Even throughout the day or the times during the day, your medicine doesn't provide such relief,” and asking them each and every time during each visit, “A time will come,” and they'll say, “Oh, I've been starting to have OFFs. I realize it now.” Because if a patient does not have OFFs, no matter what you tell them, no matter how much you try to explain it to them, they just, at times, cannot get it. Either they feel they're missing out on something, not having OFF time, or they feel the levodopa is not working for them, but that does not mean that we need to stop asking these questions of our patients. We need to keep asking them because sooner or later, they will start having OFF time. They may have a very mild OFF or they could have an OFF where they have a hard time getting up and walking. But unless we start having these conversations earlier, both the patient and the clinician is going to have difficulty trying to understand.

Robert A. Hauser, MD, MBA: I want to add to that that I think still for clinicians, it starts with understanding that patients develop response fluctuations over time. One thing that I try to teach, especially to students and residents, is you can't always believe your lying eyes. You see a patient in the clinic and that's how they're doing right then. They may be doing totally different an hour from then, and you can't tell if they're doing moderately. Is that because they're ON or is that because they're OFF? You’ve got to talk to the patient and understand where they are in their levodopa cycle to understand how to think about the rest of their day. The other thing, just to sort of repackage what Raj was saying is you can't just say, “Well, do you have time when you're OFF?” You’ve got to talk about how they're functioning and how they're medication is working or not working at various parts of the day because they don't understand the language in the same way and you can't count on that. You must get to the words that people understand and talk about in everyday usage.

Rajesh Pahwa, MD: Parkinson is one of the few conditions where the patient changes during the day. The classic example is the patient goes to the hospital and is OFF and cannot get out of the bed. And the nurse comes and tells the patient, “Oh, 5 minutes ago, you got up and went to the bathroom. Why do you keep ringing the bell that now you can't get up and walk?” That's how OFF is for patients. Unless we educate people, whether it's a clinician, whether it's the nurse, they have a hard time understanding how come this patient who was able to get up, go to the bathroom, walk around 5 minutes ago suddenly is telling me I cannot function at all. Unless these people realize what OFF time is, it is very difficult for them to get a concept of this.

Dr. Stuart Isaacson: Sometimes it's transition zone. Go ahead, Laxman.

Laxman Bahroo, DO: I see that with rehab. I see that with rehabilitation for folks that go into inpatient rehab. We get phone calls because our patient may have gone to the hospital for an infection or some other medical procedure. Now they need rehab. They go to rehab; they're having fluctuations because their doses aren't being given at the right time. Maybe they're being given with food. Maybe they aren't being given correctly. Suddenly, the patient's fluctuating and the patient's family members are being told, “Well, this is it. They can't rehab any more than this. They can't function because they're having too much OFF”—coincidentally around the times when the physical therapist is coming in. The physical therapist feels like the patient's effort is good on some days, not good on other days—not because they're not putting effort into it but because they are fluctuating. Many times, we'll get these phone calls at that time. The education not only goes to nurses but also to rehabilitation folks that are participating in what a lot of patients will utilize with Parkinson rehabilitation services.

Robert A. Hauser, MD, MBA: I just want to add on to that. This isn't strictly something we call OFF but patients get put on dopamine receptor blockers, and that's part of the dynamic status of Parkinson patients. When they're on dopamine receptor blockers, they're going to do worse. We don't typically call that OFF but it's a kind of OFF in a sense.

Transcript Edited for Clarity

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