Communicating With Patients About OFF Episodes


Daniel E. Kremens, MD, JD, discusses best practices for speaking to patients about OFF episodes.

Daniel E. Kremens, MD, JD: How do we communicate with patients about OFF? The first thing is to explain that every patient is different and will experience OFF differently, and that there are different types of OFF. The most common type of OFF is what we call morning akinesia. Morning akinesia is from the time the patient has taken their last dose of levodopa the night before until their first dose of levodopa in the morning kicks in and they’re OFF. About 60% of patients are experiencing morning akinesia, so this is the most common OFF. It’s important to ask patients, “How are you when you wake up in the morning? Are you able to do the things you need to do before your medicine kicks in?” Another common kind is the wearing off. That’s when the patient knows how their medicines work, but then predictably they start to notice that their medicine is wearing off before the next dose. They’re taking their levodopa 3 times a day, and it seems to hold them. But over the past year, they’ve started to notice that about an hour before their next dose of levodopa is due, they’re slowing down, not able to do the things they need to do, and they feel anxious. That’s predictable end-of-dose wearing off.

Then there’s delayed ON. That’s when the patient takes their medicine. Let’s say it normally takes 20 minutes to kick in, but sometimes it’s taking 40 or 50 minutes. That’s probably due to gastroparesis and dysfunctional gut. They’re taking medicine, but it’s just not getting in. This leads to another kind of OFF, which is dose failures. This is when they take the dose but it never works. That could be a result of gastroparesis or dietary protein. The final kind of OFF that we think about, which is very difficult for the patient, is the unpredictable OFF. The patient may be doing very well and then suddenly find themselves OFF. Then 20 minutes later, they turn back on. This is challenging for patients. It’s important to discuss with patients that there are different kinds of OFF. Describe them for the patients, and then get a sense if the patient is experiencing any of these: “In the morning, is there a time when your medicines don’t seem to be working as well? Are there times when your medicines don’t kick in or take too long to kick in?” Once we figure out if the patient is experiencing this—a lot of times patients have trouble recognizing they’re OFF; they may not realize their anxiety or slowness is due to the medicines wearing off, and they may feel it’s part of their disease—it’s important to let them know that we help them manage that OFF so that they don’t have to live that way.

How do patients experience OFF episodes? Is it that they always have end-of-dose wearing off and their tremor returns? Is it that they have unpredictable OFF [episodes]? Is it that they have morning OFF and they feel very anxious as they’re waiting for their medicines to kick in? The answer is that if you’ve seen 1 patient with Parkinson, you’ve seen 1 patient. Every patient is different, and every patient can experience their OFF differently. It’s not just that each patient experiences OFF differently. It may be different from day to day for the same patient. Some days patients may experience a return of their motor symptoms. At other times, they may experience a sense of dread or anxiety as their meds wear off or as they experience an OFF episode. There’s no clear pattern. Some patients are very predictable. They have classic end-of-dose wearing off: they know an hour or a half an hour before their next dose is due that they’re going to wear off. But for many, it’s not predictable. What’s so impactful about OFF is that they don’t know when they’re going to have it. They don’t know what they’re going to experience. Are they going to have difficulty getting out of a chair, and their tremor reemerges? Or are they going to feel foggy and anxious? It can be very variable.

How do patients talk about OFF, and how can we better communicate with patients about this? Patients have a difficult time recognizing OFF and describing OFF because the symptoms can be so protean. They can be different for each patient, and they can vary from day to day to the patient. They may not realize an OFF episode. Things I like to ask the patient include, how do you feel when your medicine is working best? Are there other times that you feel differently, so you know your medicines aren’t working their best? When you experience these symptoms, is it related to when you took your medicine? That might be a hint that they’re having a predictable wearing off.

I like to use the questions, “Are there times when the medicine doesn’t give you your expected benefit? Are there times when your medicine wears off before your next dose? Are there times when you have strange feelings that you can’t explain, such as fogginess or mood changes? Is there any relationship to when you’re taking your medicine?” It’s important to ask patients who are struggling to keep a diary for when they’re taking their medicine, describing what symptoms they’re experiencing. We can see if there’s a relationship. Ask them if their symptoms are related to meals. Some patients are having too much dietary protein or taking their medicine too close to eating. We generally tell patients to take their levodopa at least a half an hour before they eat or an hour after they eat to try to avoid that dietary protein issue.

There are lot of ways to explore the issue. The key is that you explore the issue, you make sure you’re asking the patient questions about how their day is going, maybe ask them to keep a diary that you can review. In the future, we may have a little more help from wearables to give us a sense of when the patient is OFF because patients sometimes have trouble describing this. With respect to the motoric symptoms, wearable sensors may give us some sense of how the patient is actually doing.

Transcript edited for clarity.

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