Initiating Patient Conversations for ON/OFF Episodes in PD


Rajesh Pahwa, MD, leads a discussion on approaching conversations about ON and OFF episodes in Parkinson disease throughout a patient’s treatment journey.

Stuart Isaacson, MD: It sounds like we’re always trying to find out what time of the day a patient isn’t getting full benefit from doses of levodopa, whether it’s first thing in the morning, at the end of a dose, the beginning of a dose, or some other time. Let’s turn to our patients and their course and journey. When in a patient’s treatment do you begin to have this discussion about ON and OFF and whether they’re having full benefit from doses? What does the conversation sound like when we’re starting to ask our patients and their families and caregivers, and trying to query whether OFF could be emerging? What do you look for in night, in mornings, between doses? How does that conversation go, Raj?

Rajesh Pahwa, MD: I like to ask my patients, “When you wake up in the morning, how are you doing?” A lot of patients get the sleep benefit, and they’re doing well in the morning. Then I ask them, “What happens after you take the first dose of levodopa?” If a patient isn’t having any fluctuations, they’re going to say, “I’m fine. Nothing changes.” “Do your symptoms change before you take your next dose?” “No, nothing happens.” “Are you the same throughout the day?” “Yes, I am.” Early in the disease course, that’s enough for me to see that this patient most likely isn’t fluctuating and is in the same symptom control throughout the day. If they take a dose, it doesn’t change. If they’re late in taking a dose, it doesn't change. This makes it clear that they’re not fluctuating. But if they start telling me, “I wake up in the morning, and I’m slow going to the bathroom. But I take my first pill, and I’m fine in 10 minutes. Nothing is going on with me the rest of the day—I don’t have any problems,” that gives me an idea they are having early morning OFF, but their medicine is kicking in fast enough, in 10 to 15 minutes.

We must be careful in people who are so set on their doses when you first start them. They’re taking their dose at 8 AM, 12 PM, 4 PM, and 8 PM, but they’re waking up at 6 AM. From 6 to 8 AM, they’re struggling to get ready, struggling to do anything, because no one told them they need to move their dose earlier if they’re having early morning OFF. These are conversations I have early in the disease course, but if a patient is fluctuating, my questioning may change depending upon what kind of OFF they’re having.

Robert A. Hauser, MD, MBA: When I first make the diagnosis, either on that initial discussion or the first or second time I see them back, they usually ask, “What does this mean? How am I going to do?” I usually go over that there’s a honeymoon period. I tell them that we have medications that treat Parkinson and these motor features pretty darn well for several years. I usually say for 5 to 7 years, something like that. But then I’ll say that we do have limitations, that many patients develop motor fluctuations. I’ll draw it out. I’ll usually say that for 5 to 10 years, many patients are developing motor fluctuations early on; dyskinesia is later. Then I’ll get into 10 years and beyond. Many patients have more problems, including balancing cognition. Then I’ll explain that that’s why we’re working hard to develop medications, to slow this disease down. I find that it’s a good entry to talk about clinical trials and all the wonderful work all our centers are doing. That’s the intro I give patients.

Stuart Isaacson, MD: Do you think the emerging wearables that are being looked at will help us and help our patients identify OFF earlier or more accurately, or do you think they’re not ready for prime time?

Laxman Bahroo, DO: I’m intrigued by wearables, but I’m not sure if they would translate to practical usage. Given that our population is in their mid-50s to 70s or 80s, there may be some technological challenges. Wearables can be helpful for individuals who have a disconnect: they tell us they have a tremendous amount of tremor, but when we see them in the office, they don’t have a lot of tremors. We see them at different times. We do virtual visits. We try to track their symptoms. The wearables can give us input on the symptoms we’re never able to track. There’s a role for that.

It’s also important for folks to be able to track dyskinesia. We see patients with dyskinesia, and family members tell us there’s a lot of movement. They conflate dyskinesia and tremor. Because they give us poor information, we make poor judgments, which don’t serve our patients well. For folks who fluctuate with dyskinesias and OFFs, it might be helpful to get a wearable to see how many OFFs they’re objectively having, how much dyskinesia they’re objectively having.

The final common denominator in the practicality is how easy it is to use. If they run into problems with wearables, how much support can they get? If it yields meaningful information, despite those 2 obstacles, variables are a great alternative for patients in many ways.

Rajesh Pahwa, MD: Wearables haven’t reached prime time. There’s still a lot of work that needs to be done. One challenge with wearables is that many people are wearing an Apple Watch and carrying an iPhone, and you’re saying, “I’m going to give you another thing that you need to put on 1 hand, or have in 2 hands, 2 legs, and on your chest.” That’s difficult for a patient, to have 5 sensors on to find out if they’re fluctuating. Having an app on a watch is a different issue. We can get reasonable information out of it.

The other thing is it must be passive. We can’t have our patients do certain tasks every hour or every 30 minutes to see when they’re doing well and when they’re not. If you look at a lot of built-in things on an Apple Watch or an iPhone, you can get a reasonable idea how the patient balances during the day, how many steps they’re taking during the day. Are there times of the day they’re more active than at other times? We already have lot of information our patients are carrying around that we’re not even checking. Someday in the future, they’ll be ready for prime time. We’re still a few years off from that.

Transcript Edited for Clarity

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