Caregivers Role in Identifying Off Symptoms


Daniel E. Kremens, MD, JD: One thing we’ve talked a lot about are the patients here. How good do you think caregivers are at identifying OFF? And do we discuss it adequately enough with them at the visit?

Rajesh Pahwa, MD: I always turn and ask my patients’ caregivers, “Can you see and tell when the patient’s medication is working or not?” Because to me, what they observe, and if they can observe the patient is having OFF episodes, which are really much more than a patient having a non-motor OFF or a slight motor symptom, so to speak…. To me, the caregiver is very important in this situation.

Stuart Isaacson, MD: Yes, we have to educate patients, families, caregivers. Because patients feel what they feel, but they can’t see what their families and caregivers see. You really have to provide this full education to make patients aware of that. We might be able to improve these symptoms by adjusting medications.

Daniel E. Kremens, MD, JD: Do any of you keep a symptom list, or anything like that in the waiting room for patients and caregivers to take a look at?

Rajesh Pahwa, MD: Like a diary, do you mean?

Daniel E. Kremens, MD, JD: A diary or a list of motor and non-motor symptoms that the patient is experiencing, so they can check them off and you can make sure that’s discussed?

Jill M. Giordano Farmer, DO, MPH: Yes.

Peter LeWitt, MD, M.Med.Sc: We do, and we use it for structuring the visit. All of the questions that I might ask are there, filled out in advance. But the form can go home, also, to guide people on what Parkinsonism is. They’re not arthritic symptoms, or why you’re sleepy during the day, necessarily. But this brings up an important point. In clinical trials, we use the home diary—the Hauser diary—ON and OFF, and we have to instruct the patient on what OFF and ON is. And we return to these questions with the patient. But unfortunately, OFF is the full range of Parkinsonism. It’s not captured by that diary. The data you read about regarding drugs, and how they work, and how much OFF time improvement there is are really just a shadow of what is really going on in the patient’s experience. And we have the opportunity of email feedback from patients, or patients mailing back things by snail mail, whatever it is, to give us a change. And then its translation into clinical effect, because the next steps might not wait until 6 months or 8 months at the time of the next visit.

And so, one of the things I want to bring up is, how often should the patients be seen when they have the motor fluctuation problem, or when they’re not optimally controlled in the eyes of the treating physician, or when the caregiver has a disparity with what the patient is saying? What’s that feedback? What’s that continuing interaction?

Rajesh Pahwa, MD: The question is, how often should the patient be seen, or how often can we see the patients?

Peter LeWitt, MD, M.Med.Sc: Or interact with them, even if we don’t see them, given the context that somebody has motor fluctuations, has OFF time, has suboptimal control.

Rajesh Pahwa, MD: Ideally, it should be every few weeks, and not every few months. The challenge at times becomes if you are doing electronic communication, it can be difficult to get the same feedback as opposed to a patient sitting in your clinic and explaining it. Just because a patient is having OFF, it doesn’t mean that it is affecting them or that it necessarily needs to be treated. Because OFF could be just a little, versus OFF where a patient cannot get up and walk during that time period. So I think there’s a whole spectrum of OFF. And just because a patient is having OFF time, it doesn’t mean that we have to necessarily be aggressive about it. But at the same time, if the intensity of OFF is worse or is disabling, then yes, I think we should try to reduce or eliminate the OFF as much

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