Experts in movement disorders share the importance of multidisciplinary team collaboration for the management of OFF episodes and shared-decision making for treating Parkinson disease.
Stuart Isaacson, MD: Laxman, you work with several nurse practitioners, fellows, and residents. What’s your experience with multidisciplinary collaboration and trying to manage OFF episodes? If you have a patient in clinic and you want to know what’s happening with their OFFs, how do you follow up? Do you call them every day or night? Do you have a team that interacts or tries to follow up? What information can you share about how you interact with your nurse practitioners and other members of your care team?
Laxman Bahroo, DO: We’re all talking about what happens if you start a medication, but it doesn’t have that desired effect. Thankfully, it happens less often, but it’s important to stratify these OFFs. When you have these OFFs and somebody is telling you they started you on a medication, the first thing I ask is, “Did you take it for the right amount of time? Did you take the correct dose?” Some folks may be dose-phobic. You give them 1 tablet to take of a particular medication, but they start taking half. No, I want you to take 1. I want you to take it for 2 weeks to see what the response looks like.
After we confirm that they’ve taken it correctly and it doesn’t work, I’m a big fan of diaries. I know not everybody is, but diaries help. I can give them a few days of diaries to hold. They can download them from the internet.… I ask them to keep a record of very simple things. Check off when they take their levodopa dosing, when they experience OFFs, and when they eat. They have to keep track of only three things: levodopa, food, and OFFs. Sometimes it’s difficult to put into words and think back a few days of diaries—not necessarily every day for the next 10 or 12 days; just keep a few days of diary. I ask them to come back. I probably don’t have that availability, but my resident clinic might have that availability or a nurse practitioner clinic might.
I want to capture them sooner in that time portion rather than saying, “Take this. Fill the diary out. Fill in about 3 to 4 days. Come back and see me at my next available.” That could be 4 months from now. They’re going to wait 4 months with that data for, or they’re going to call me and I’m not going to be able to review the data. I want them to come back to do a virtual visit or a live visit, whatever suits their needs based on their distance or timing. We review that data and I say, “I see you’re not just wearing OFF, but you’re wearing OFF and you’re having a dose delay. For no reason whatsoever, you had a dose delay.”
I’m a big believer of what I call the corrective effect of diaries. Sometimes folks keep their diaries, and they check off the dose that they took at 3 PM. They say, “I shouldn’t have taken that dose at 3 PM. I should have taken that dose at 1 PM.” That corrects them to say, “You delayed your own dose and ended up with an OFF. That‘s been helpful. Sometimes it’s easier to say, “I took that dose at 12:30 PM and ate at 1 PM. No wonder I had an OFF.” Diaries are like a mirror in that sense. They give you a reflection, and hopefully that leads to some corrective effect. Even if it doesn’t, you can easily educate patients based on some of those things and be able to see their OFFs where they’re not able to put words into it. Having that multidisciplinary component with fellows, residents, or nurse practitioners allows you to bring those patients in sooner than waiting 3, 4, 5 months to see you while they’re still suffering from these OFFs.
Stuart Isaacson, MD: Raj, before we turn to the management specifically of OFF and how we strategize some of our treatment options available, let’s talk a bit about palliative care and shared clinical decision-making. How do you incorporate this view of OFF, when…you don’t have benefit from your dose of levodopa? This speaks to a palliative care approach and shared clinical decision-making. How do you incorporate your patients and their families and caregivers into understanding what OFF is and when, how, and why to treat it?
Rajesh Pahwa, MD:Technically, palliative care is an extension of multidisciplinary teamwork involved in helping our patients. Our patients with Parkinson not only have OFF time, but they can have dyskinesias, they could be falling, they could be having anxiety, depression, psychosis. We’re looking at a bunch of potential symptoms that can occur. Yes, OFF is 1 of them, but if you’re going to and educate the extension of physicians—a nurse, a nurse practitioner, whoever it is—they should all be aware of these different OFFs and symptoms that the patient gets. If I have a patient who’s falling 4 times a day and I send them for physical therapy, but the patient is falling only when they’re in the OFF state, that’s not going to help my patient. Physical therapy is not going to give them a good ON.
First, I need to talk to the patient and get an idea that this is the OFF that can be treated. Similarly, the patient could be freezing, whether they’re ON or OFF. These are things that we need to educate our nurses, our physical therapists, our occupational therapies, so that these patients get improvement in their symptoms after they’re optimized on medications. Using certain forms of therapies without optimizing their medication isn’t the best way to go. That’s why we go back to this being teamwork—all the clinicians involved in the care of the patients know what’s going on, what medication they’re taking. Is the patient optimized? All that is important in the decision-making.
Transcript Edited for Clarity