Impact of OFF Symptoms in Parkinson Disease on QoL


Daniel E. Kremens, MD, JD: You bring up an interesting point there, Raj, and maybe you’d like to address the question of the impact of OFF on quality of life. What does OFF mean?

Rajesh Pahwa, MD: OFF can be, like I said, anything from very minimal symptoms where we ask a patient, “Is it bothering you? Do we need to do anything? Is it functionally impairing you?” And the patient is saying, “No, it doesn’t.” All the way up to instances where they have a hard time dressing in the morning because they wake up and they are OFF; they have to go to the bathroom and because they’re OFF, they cannot go to the bathroom. And when they are OFF, they have the urge to go, but physically they cannot go. To me, it can really impact them on what they can do. And imagine that this person is working. If they are OFF for 1 hour a day, and that’s during work, that person cannot work for 1 whole hour. That can be very impactful.

At times they go to the hospital and the nurses might think, “Wait a second, half an hour ago you got up and went to the bathroom, and now you want me to come help you, or help you dress.” Well, that’s what their OFF is. But the nurse might be thinking, “This patient has psychological problems. They’re suddenly wanting me to give them a sponge, or change them.” But that’s how much it can impact things.

And then, of course, you have the psychological issue. They’re afraid to go out because, “Oh, if I go to a restaurant I may go OFF. I may not be able to walk back to my car, or I may not be able to drive back home.”

So to me, OFF can really impact a patient’s quality of life. It can affect them physically. It can affect them emotionally. It can affect their work. And the other thing is, it can affect their balance. They may fall during an OFF time. I think OFF is important. And it’s more the severity of the OFF and how much it can affect their quality of life.

And the other thing is, we do know there are studies that demonstrate that the cost of treating Parkinson is higher when a patient is having OFF, whether it is that we are using more medications, or whether a patient is more likely to fall and end up in the hospital, but that also impacts….

Peter LeWitt, MD, M.Med.Sc: There are other costs as well. Patients are prematurely retiring. Patients are withdrawing from social interactions. Patients are having an increased perception of self-shame. This is a new area of research that’s coming up, all because of the burden that they place on themselves and perhaps on their caregivers, to stay in, to withdraw. So just carrying an on-demand therapy in one’s pocket, even if not used regularly, can be an empowering tool.

It’s interesting. From the long-term follow-up of the inhaled levodopa powder study, which reported that, on average, 3.5 OFF episodes occur during the day, the patients chose to only use it twice. But having that power to use it twice, or whenever being OFF shows that empowerment—that perhaps that patient can return to the workplace or social situations with confidence that they can get back ON in a satisfying and clinically meaningful way, as needed, within 10 minutes or 15 minutes.

Daniel E. Kremens, MD, JD: Yes. I think the emergence of on-demand therapy, and we’ll talk about therapies in a little bit, has given us the ability to fundamentally shift the treatment of Parkinson disease. I’m sure we all have these stories of, for instance, things as common as patients who have started to avoid physical therapy because they couldn’t reliably predict that they were going to be ON when they needed to be. Or you know, Stu, I remember you telling me about one of your patients. I believe it was his daughter’s wedding? He suddenly was turning OFF at his daughter’s wedding and was able to use an on-demand therapy. When you think about how awful that would have been, and you talk about how this is 1 of the great events in a patient’s life. And you know, sometimes we have told people, particularly in the old days, “Well, just take an extra dose of levodopa.” But we know taking an extra dose of levodopa is not going to do anything if it’s sitting in the gut. We need therapies that can bypass the gut, and now we have these on-demand therapies.

Stuart Isaacson, MD: This gentleman was so concerned about being able to walk his daughter down the aisle that he was planning to have a wide-angle camera, so that when he would take the extra medicine orally, and it would finally kick in, he knew he would be very dyskinetic and wanted to be in the frame. So he had a wide-angle camera. And just giving him the ability to, in this case, inject subcutaneous apomorphine, he was able to time it, inject it, and then walk down the aisle without having to worry about all of these other problems.

Daniel E. Kremens, MD, JD: Right. These things may be small in the big world picture, but in that patient’s life it’s a remarkable impact. You could see if he wasn’t able to walk his daughter down the aisle, the quality of life impact that that would have on him.

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