Asking, Educating and Clarifying Parkinson Patient Care Goals with Kathrin LaFaver, MD

August 28, 2018

The Director of the Movement Disorders Clinic at the University of Louisville emphasized the importance of knowing each patient, where they’re coming from and their goals.

Kathrin LaFaver, MD

Due to the lack of neurologists nationally, primary care physicians are oftentimes the first to interact with a patient with possible Parkinson disease. While it’s not expected for primary care physicians to diagnose and manage Parkinson disease, Kathrin LaFaver, MD, Raymond Lee Lebby Chair in Parkinson disease research, Director of the Movement Disorders Clinic, and Assistant Professor of Neurology at University of Louisville, strongly encourages a referral to a neurologist to assert in the diagnosis and consider or start a treatment plan.

LaFaver emphasized the importance of knowing each patient, their goals and the goals of the family. She added that health care providers may be surprised to find how much they can help patients if they know what the patient truly values.

To provide more insight, NeurologyLive spoke to LaFaver to discuss the partnership between primary care and specialists in neurology that treat patients with Parkinson disease.

NeurologyLive: Since PCPs are often the first to see patients with symptoms of Parkinson disease, are there any educational concerns that need to be addressed prior to referring patients to a specialist?

KF: That’s a very good question because the primary care physicians are very often those that see the patient first and a patient who might experience some tremor usually doesn’t go straight to a neurologist, so absolutely. I think definitely for every primary care physician or other providers it’s very important to be aware of Parkinson signs and especially also these non-motor warning signs. For example, when you see someone with a tremor, sometimes it can be very hard to distinguish if it’s Parkinson disease or essential tremor. Asking a bit about these non-motor features like “Have you experienced a lack of smell?” “Have you experienced near-onset constipation the past year or so?” and asking about abnormal sleep behaviors like asking the patients spouse if they have started talking in their sleep or having violent dreams, thrashing around, acting like they’re being chased in their sleep, which is a typical feature in the REM sleep behavior disorder—can actually go a long way in identifying correctly people with Parkinson disease.

Now with that being said, we certainly don’t expect primary care physicians to necessarily diagnose and manage Parkinson disease, but when it is suspected, I would encourage a referral to a neurologist to assert in the diagnosis and decide if and what treatment is needed. As Parkinson disease is usually a disorder that starts slowly and progressing slowly over many, many months, there’s usually not an acute need to start someone on a medication for example, because again, the symptoms come on slowly and progress over many months and often it’s more beneficial to a neurologist if they see the patient unmedicated to really be able to assert in the diagnose rather than having people started on a medication that might kind of mask symptoms and then not being able as well to assert in the diagnosis.

What advice would you give to other clinicians treating patients with Parkinson?

KF: It’s very important to get to know the patient and know where they’re coming from and what their goals are. Sometimes the goal that the physician has might be very different from the patient goals. What I do see a lot and also teach our trainees is that the motor signs are the most obvious, so if you look at a patient who has tremor, what you see is the tremor, but it might not correspond to the patient’s most disabling symptom.

Again, when working with residents in the clinic, I very much stress patient-oriented care and a few great questions to ask any patient, “What is your most important goal for this visit? How can we best help you? What are the symptoms you are suffering from the most?” It might not be so obvious as health care providers think it is, and as we talked about, Parkinson is so multi-faceted that if you don’t educate patients they might not know their sleep issues, their constipation issue is related to Parkinson and if they don’t know, they’re not going to mention it to a brain doctor because constipation/bladder issues, some of these things seem unrelated, or even depression, it’s not something people often volunteer because it might be embarrassing to them or they might feel guilty about it or hopeless, that’s a sign of depression, and they might think no help is available anyways for them. So again, always ask, and educate, and clarify the goals of care for the patient and the family, and you might sometimes be surprised and might also be surprised in how much you can help if you really know what the patient values.

What are your thoughts on CBD oil as a treatment method?

KF: You always have to be careful to balance hope versus hype. The newest hype on the market, in my practice what I see a lot, is the CBD oil because it really gets pushed, especially in the lay press and some Internet forums, as kind of the new kid on the block and it’s sort of touted as almost a miracle that can really help not only Parkinson, but you name it—it’s really kind of touted as a miracle cure for just about any disease you can really think of.

We don’t have a lot of data available on its actual benefits and there are potential concerns especially for cognition and worsening off balance, for example, which can be big issues in our Parkinson patients. In the absence of really more rigorous studies, I usually do not encourage people to both buy products that we’re not exactly sure what they’re getting and just experiment, and we have definitely other ways of treatment that are much more rigorously studied to date. Along those same lines, every couple of years things are claimed to be beneficial but then, unfortunately, turn out to be not, so I think again, we certainly do need research, we do need to find hopefully a way to diagnose Parkinson in the early steps and find ways to stop it and to really have a curative treatment for it, but in the meantime, there’s many things we already have available and can do, and again, encourage patients to be active, and be active and proactive in their care and self-care can really go a long way to enable people a good quality of life, here and now.

Anything else you wanted to mention?

KF: We talk a lot about medication for Parkinson and one of the most interesting topics coming out of research is really people who exercise do better, and it’s sort of this good news/bad news. We’re all waiting or hoping for the magic pill that will cure Parkinson, but we should all do more exercise because it’s good for cardiovascular health and all these things. I’ve found it very encouraging to see that people who do exercise on a regular basis, and there’s many Parkinson specific exercise programs now developed, there’s the boxing for Parkinson, there’s several places that have looked at rhythmic activities like dancing, pedaling and bicycling in a faster kind of rate can be very helpful. Most communities have specific exercise classes tailored to Parkinson available, and there’s many other things that can be done like balance exercises can be very helpful. People really do seem to do better if they do exercise programs and that’s something that’s available to everyone and overall fairly low cost, depending on which specific program you sign up for. That’s definitely something that I stress in my practice.

Transcript edited for clarity.