To make the most of the limited time Parkinson’s disease patients and physicians have during an office visit, the nonprofit Parkinson’s & Movement Disorder Alliance (PMDAlliance) has created emPowered!, a new tool for tracking symptoms and reporting them to healthcare providers.
The booklet, in which patients will log information about medications and daily activities, for example, is designed to help patients focus on the most important or troublesome changes in condition. Because time constraints often limit what patients and physicians discuss, it is critical that important information is readily available during an appointment.
A survey conducted during the 2017 World Parkinson Congress in Portland, Oregon, revealed that 22 percent of patients said they felt like a burden when talking about their problems with their doctors. In addition, 30 percent said they felt as if they were complaining when they talked about issues regarding their medication.
“In conversations with thousands of people across the country who are impacted by Parkinson’s disease, we recognize a consistent need — to learn how to advocate for oneself during an appointment with the physician,” Sarah Jones, CEO of PMDAlliance, said in a press release.
“Add this barrier to an incredibly complex disease like Parkinson’s and the issue is compounded,” Jones added. “Every week I speak with someone who has a symptom that may be tied to Parkinson’s disease, but they don’t realize it. Combined with a hesitation to tell their doctor, the result is that they may not receive the full benefits of their doctor’s care.”
PMDAlliance will start distributing emPowered! at its upcoming Learn.Live.Connect conference in Boston, April 27.
Each attendee will receive emPowered! and training on how to best use the tool. Participants also will have the opportunity to learn more about the disease from two U.S. experts, Laxman Bahroo, DO, and David Shprecher, DO, who will talk about medical and surgical management of Parkinson’s, and the latest treatment options available for patients with movement disorders.
Representatives from leading movement disorder centers also will be present at the conference to provide in-person information about how to access their services.
Bahroo is the director of the Neurology Residency Program at Georgetown University Hospital. Shprecher is the director of the Movement Disorder Program at Banner Sun Health Research Institute in Phoenix, Arizona.