PMD Alliance seeking participants for survey on Parkinson’s off time
Patients, caregivers will be asked to share experiences in online study
The Parkinson’s and Movement Disorder (PMD) Alliance, a U.S.-based nonprofit, is seeking participants willing to take part in an online survey about the experiences of patients and caregivers with off time in Parkinson’s disease.
Off time, or periods when medication wears off and symptoms return, are common among people with Parkinson’s and can significantly impact daily activities. This survey aims to improve understanding of how off time is defined, and to identify related communication issues and opportunities.
According to a PMD Alliance press release sent to Parkinson’s News Today, the advocacy organization expects approximately 1,000 people living with Parkinson’s and their care partners to complete the survey.
“This survey is a chance for individuals and families affected by Parkinson’s to impact the future of care through shared experience,” said Andrea Merriam, CEO of PMD Alliance.
As detailed in the consent form, it should take respondents about 10-15 minutes to complete the study.
One focus of PMD Alliance survey is communication
While off time is commonly cited as a key issue for people with Parkinson’s, according to the PMD Alliance, discussions about it between patients, caregivers, and healthcare providers are often inconsistent and unclear.
Through this survey, the nonprofit aims to enhance the scientific understanding of the lived experience of off time in Parkinson’s. Additionally, the survey will explore how patients and caregivers communicate with healthcare professionals about off time — with the goal of developing educational resources for the Parkinson’s community based on the findings.
As well as questions about off time, the survey seeks patient demographic information and asks participants about disease course and treatment. It is titled “Survey on Patient Knowledge and Communication Around Off Time.”
Your voice matters — and this is one way to ensure it’s heard.
A research team led by Kelly Papesh, a nurse practitioner and clinical director of PMD Alliance, will analyze the data. The team has confidentiality protocols in place and will not include any identifying information in reported results, the organization noted.
PMD Alliance researchers last month published a study with findings from another survey that focused on the burden of tremor, a common motor symptom of Parkinson’s. More than 600 people with Parkinson’s and care partners completed the questionnaire.
Among other results, the study reported that current Parkinson’s medications often do not entirely control tremor and that the symptom made many participants feel self-conscious.
Another active PMD Alliance survey asks people with Parkinson’s and their care partners to share factors that may influence their access to medications. These results may help to influence the organization’s policy priorities and advocacy goals, per the nonprofit.
With the survey about off time, PMD Alliance hopes to gather insights directly from those in Parkinson’s community.
“Your voice matters — and this is one way to ensure it’s heard,” Merriam said.
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