The director of the University of Southern Florida’s Parkinson's and Movement Disorders Center shared insight into the current focus on the nonmotor aspects of Parkinson care and the findings of a survey of patients and caregivers.
Robert A. Hauser, MD
The results of a recent survey of 700 patients with Parkinson disease and their caregivers show that the nonmotor symptoms of the disease have a negative impact on their quality of life, with the majority of patients and their carers citing an effect on sleep, self-care, and socialization.
In total, 378 (54%) of those surveyed were care partners and 287 (41%) were those with Parkinson. Almost 90% of them reported experiencing nonmotor symptoms, with them having some impact on quality of life for 84%. About half of the patients indicated that nonmotor symptoms represented a greater challenge than motor symptoms.
Conducted by PMD Alliance, the authors included Robert A. Hauser, MD, director, Parkinson's and Movement Disorders Center, University of Southern Florida. To gain more insight into the current focus on the nonmotor aspects of Parkinson care, the biggest obstacle to addressing these symptoms, and what can be gleaned from the survey data, NeurlogyLive
spoke with Hauser.
NeurologyLive: How much of the focus in Parkinson's care is centered on non-movement symptoms? Are they being properly addressed by clinicians?
Robert A. Hauser, MD:
I would say that in our practice, which is an expert center, I would say that we spend 60% to 70% of our time addressing nonmotor symptoms of Parkinson disease. With regards to your question as to are they being properly addressed—I think there’s a general feeling that the more expert the physician and the facility, the more familiar they are with the nonmotor features and the more time they can spend with the patient to assess and try to manage them. Probably, the less familiar a physician is with Parkinson, the more they might focus on the motor features and have less time and focus and knowledge to delve into the nonmotor.
What’s the biggest obstacle to treating these symptoms—or which symptoms present the biggest challenge?
One issue is the physicians who are providing care for Parkinson disease. I'm aware of statistics that say half of Parkinson disease patients are being cared for by primary care physicians. So, I'll just say it's an open question whether they're knowledgeable in treating the nonmotor symptoms. But the next issue is: Do we have adequate tools and treatments for the spectrum for nonmotor symptoms? For some, we have reasonable treatments, and for many, we don't. To get to the question that you asked me, perhaps the biggest most impactful nonmotor symptom is cognitive dysfunction and ultimately dementia. Although we have some mildly effective symptomatic treatments, they're not nearly effective enough, especially as the disease progresses.
To think about some of these we've had OK treatments for depression, and we have some treatments for hallucinations, for low blood pressure, and for sleep, but we don't really have treatments that are reasonable for anxiety. Cognition is the big one that we really don't have adequate treatments for, so there's this combination of: are physicians adequately assessing and our need for better treatments. Even for something like depression. Although we're pretty good at it, there's still a set of patients who have refractory depression that we'd like to have better treatments for.
What is the main takeaway from this survey which you and colleagues conducted?
That our survey, which is our study, confirmed that nonmotor symptoms are very prevalent. What was sort of new was that we directly assessed this from the patients without going through the physicians, and it wasn’t a study population. What we saw was that care providers reported that these nonmotor symptoms were number 1, more prevalent, and number 2, more impactful in a negative way. It seems as though care providers are in a position to more accurately detect and asses these symptoms. So, the message is that, when assessing these in the clinical care situation, physicians need to engage care providers and need to ask them questions, as well as the patients themselves.
Transcript edited for clarity
Hermanowicz N, Jones SA, Hauser RA. Impact of non-motor symptoms in Parkinson’s disease: a PMDAlliance survey. Neuropysch Dis Treat. 2019;15:2205-2212. doi: 10.2147/NDT.S213917.