PMD Alliance Survey Aims to Understand Burden of Tremor in Parkinson Disease

Robert A. Hauser, MD, MBA

Credit: USF Health

The Parkinson & Movement Disorder Alliance (PMD Alliance) recently invited patients and caregivers to actively take part in a survey to dive further into the challenges caused by tremor among patients with Parkinson disease (PD). In collaboration with Robert A. Hauser, MD, MBA, director of the Parkinson’s and Movement Disorders Center at the University of South Florida, the campaign encourages clinicians in the field of movement disorders to ask their patients with PD to contribute their insights.¹

The organization told NeurologyLive^® that it plans to do data analysis and expects to release the results of the survey in the second quarter of 2024. The significance of the survey lies in its multifaceted approach towards understanding and addressing the challenges posed by tremors in patients with PD. It firstly offered an opportunity for patients to provide detailed insights into the daily impact of tremors, allowing for an in-depth perspective of their experiences. The survey also serves as a catalyst for research-driven solutions by directly engaging patents in the development of future awareness campaigns, treatment strategies, and support systems. Active participants in the survey may became integral contributors to shaping the landscape of PD care and management.

“Tremor is the most common complaint of patients with PD for the first 10 years following diagnosis. However, how tremor affects patients with PD is not well understood. Does it interfere with function? Are individuals concerned with the way it looks? Does it feel bad? All of the above? Unfortunately, the burden of tremor is commonly minimized by the medical community because the tremor is erroneously considered an involuntary movement that only occurs when the limb is at rest and therefore cannot affect motor activities, and because medications are not very successful,” Hauser, who also serves as a Professor of Neurology at the University of South Florida College of Medicine, told NeurologyLive when asked about the current burden of tremor in PD.

Furthermore, the survey prioritizes confidentiality and accessibility, emphasizing the importance of patients’ privacy and ease for participation. Designed as user-friendly and respectful of respondents' confidentiality, the survey created a safe and inclusive space for open sharing to meaningful contributions from patients impacted by tremors in PD. Overall, the survey's importance lies not only in its potential to deepen the understanding of PD but also in its capacity to drive positive change and potential improve the lives of those impacted by the disease.

“Patients with PD are typically treated with levodopa. The response of PD tremor to levodopa is highly variable and ranges from complete remission to no effect and anything in between. If tremor is still bothersome, a variety of other medications are often tried such as anticholinergics, dopamine agonists, amantadine, and others,” Hauser added. “However, these medications only provide significant benefit in a small proportion of individuals and often cause side effects. For patients with PD whose tremor is uncontrolled by medications, deep brain stimulation or focused ultrasound can be considered.”

Patients with PD and their caregivers could contribute their unique perspective by accessing the survey on PMD Alliance’s site.¹ Although the survey is closed and PMD Alliance is no longer accepting responses, the organization still wants to to spread awareness and highlight the impact of tremor burden in PD for both the patient and medical communities.

“We are hoping to learn from the survey exactly how tremor affects patients with PD. We are also gathering information on how well current medications provide benefit for tremor. I anticipate that the survey will provide support for what I see in the office every day, which is that tremor carries a substantial burden and represents a major unmet need in PD,” Hauser added when asked how he thinks clinicians can benefit from those who took the survey. “I am hoping this will spur innovation and encourage development of new and better treatments for the tremor of PD.”

REFERENCES
1. Empower Change: Participate in the Ongoing "Burden of Tremor in Parkinson's Disease" Survey. News Release. PMD Alliance. Published February 1, 2024. Accessed March 13, 2024. https://www.pmdalliance.org/wp-content/uploads/2024/02/PD-Tremor-Survey-2024-Press-Release.pdf