Shared Decision-Making In Parkinson Disease Care


An expert in the management of Parkinson disease discusses the key role that shared decision-making plays in the modern treatment paradigm.

Editor's note: Because of an unfortunately unaddressable issue, the audio for this episode may be slightly distorted at times. Please see the transcript below for clarity.

Matt Hoffman: And then obviously on top of that, when talking about the surgical options you might take, which patientsdo you consider to be good candidates when thinking about surgical options?

Stuart H. Isaacson, MD, FAAN: I think that not everything about these treatments is painted in surgical and nonsurgical. I think about the patient and what problems they're having and how can I help those. We have a number of different oral medications, we have transdermal medications that can be used, we can adjust the levodopa, if it's taken frequently or at different doses, we have extended release preparations—which means that people who are ON extender can make benefit of an individual dose last longer. Then, we have a class of medicines called on-demand or as-needed, that can be used when an OFF episode occurs to reverse it and get patients going on with their day.

I sort of think in that bucket of earlier therapies, perhaps, and then we have emerged with intermediate therapies that include subcutaneous infusion pumps that people can wear, much like diabetics wear insulin pumps. Hopefully, this will be approved soon—we have a lot of patients wearing them in the research programs. And now, I think we have advanced surgical therapies.

What distinguishes them is the patients often try to put them off because they're concerned about surgical risks, and the surgical risks are low and the therapies are robust. But yet that risk is locked in our heads and inhibits patients from going forward with that. So education can help overcome that, but there's always still going to be a small and indeteriminal risk with each individual patient. So hopefully, we'll have these intermediate therapies that can help patients while they're trying to decide what to do as new therapies emerge that can keep them away from surgery, or they get the confidence and see what it's like to always be ON with these subcutaneous therapies, and then they might choose to go to with a surgical therapy, sooner—with deep brain stimulation, focus ultrasound, or intrajejunal infusion a levodopa.

Matt Hoffman: I imagine a lot of that education comes through just conversations with the patient, whether it's providing resources that they can educate themselves through or just shared decision-making. I know you mentioned it earlier that it's obviously a big part of this paradigm of care. For you, how often do you engage in that, or even for the physicians out there watching this, how often should they engage and try to engage in share decision-making? And not just with the patient, but perhaps with their caregiver, right? Because often, they can be a huge part of this process, and they're very important to involve in these things. For you, how important is it to include them in that process, and then just to kind of partake in shared decision-making overall?

Stuart H. Isaacson, MD, FAAN: Well, I think it's done on the basis of knowledge. And meetings like the AAN, and other meetings we have here talks and videos in trying to educate clinicians, doctors, and nurses, truly all parts of evolving care—new medications, new ways of using medications, and new strategies and paradigms of using medications to maintain as consistent dopamine as possible, limit disruptions, and maintain a true duration of benefit ON.

Then, we have to talk to our patients. Our patients have autonomy. Not all my patients want their caregivers or families involved, and we have to respect that on. Sometimes we do have the opportunity to talk to family or a caregiver. It's something we do. We have to balance what someone feels but can't see when they have Parkinson's, and what family and caregivers can see but can't feel about that patient. We have to try to come to common ground on what's the most important thing or two or three that they want improve or treat today, or want to monitor, or want to look for. And we have to do that by educating our patients, their caregivers, their families. We do this to virtual ways now, we introduce educational symposia and the educational lectures at our center, trying to make sure everyone knows as much as they want to know or could possibly know about the disease that they're living with.

Matt Hoffman: I imagine a lot of that also involves adjusting based on what that patient is dealing with. Obviously, patients with Parkinson, particularly as they get older, do have a lot of comorbidities, which we know have an effect on disease progression and just the patient's experience with this disease. For you, when it comes to treatment conversations, how often are comorbidities at the top of your mind, and how often are you making that part of the conversation with, "Hey, this treatment might work, but you're also dealing with this, so maybe we explored this route instead here?"

Stuart H. Isaacson, MD, FAAN: Well, sometimes you're really hindered by daytime sleepiness, by insomnia at night and then not getting restful sleep, with REM sleep behavior disorder. Orthostatic hypotension due to autonomic failure in common in Parkinson disease and related disorders. Cognitive problems and psychosis problems—a lot of medications can worsen these underlying nonmotor symptoms that are due to the degenerative process of Parkinson. So it's both due to Parkinson and can be worsened by these other therapies and may be used for the bladder or might be used for other purposes by another doctor.

We have to take the patient as a whole and find out what the problems that we need to address are, see what the risks are with therapy that we should consider, and the choose the right therapy that's personalized for that patient at that time. Lucky, though, we often have years and decades to educate our patients, and to get to know them, and follow them over time. I think about what we do today in the first 5 years, and what are we going to do with next 5 years, and the following 5 years, because, really, it's a continuum. It's decades that patients live with the disease. We have to manage the symptoms as these patients age. Constipation is a big problem, but whether we use a combination of medications to promote motility and softening stool, whether we have biomechanical stools that drive that patient with relax the bowel muscles, and I encourage taking mango as a first treatment for constipation, and sometimes we do all of that. Every patient is different, so we have to individualize our approach to patients by asking more questions, having the right discussions, and then choosing the best answer for today.

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