The Michael J. Fox Foundation for Parkinson’s Research (MJFF) has released results from a self-reported data set detailing the lived experience of the coronavirus disease (COVID-19) pandemic on the Parkinson’s disease (PD) community.

The reportedly first-of-its-kind survey, deployed through the Foundation’s online clinical study, Fox Insight, aimed to identify the effects of the global pandemic on Parkinson’s symptoms and disruptions in care. The survey, which remains open in Fox Insight, was designed in consultation with a group of nine people with PD and care partners who contributed to its content. From April 23 through May 23, the COVID-19 survey obtained 7,209 responses from people with or without PD (77 of whom reported a COVID-19 diagnosis), according to a media release from MJFF.

“It’s remarkable how many people responded so quickly to tell us how they were impacted by the clinical and social aspects of this pandemic. This is why Fox Insight exists — to meet patients where they are and to use their experiences to transform our understanding of Parkinson’s disease.”

— Fox Insight principal investigator Carlie Tanner, MD, PhD, professor of neurology at the Weill Institute for Neurosciences, University of California, San Francisco

Data Notes Impact of COVID-19 on People with Neurological Disease

Direct-from-patient data was collected at scale through Fox Insight’s COVID-19 survey, in which 51 people with Parkinson’s reported a COVID-19 diagnosis. During a COVID-19 infection, 55% of people with PD reported worsening of an existing motor symptom (ie, tremor, slowness, imbalance) and more than 50% reported worsening of non-motor symptoms (ie, mood issues, digestive problems, pain and fatigue), the survey reveals.

“Having COVID with Parkinson’s was unsettling, because doctors still don’t know much about how these two diseases interact. “My tremor got worse with COVID, and there was nothing to show if other people with PD were also experiencing this. I submitted my survey to Fox Insight because I wanted my experience to add up to something bigger.”

— Dan Morris, a person with PD who had COVID-19 and completed the Fox Insight survey

The survey also validated previously reported effects of the pandemic on people living with chronic disease, especially people of color. Of respondents, 62% reported canceled healthcare appointments, involuntary reductions in needed in-home care or difficulty obtaining medications. Non-white race and lower income were independently associated with difficulty obtaining PD medications. Furthermore, telemedicine appointments were reported by 39% of people with PD, but those with lower household income were less likely to attend appointments through telemedicine.

In addition, 35% of people with Parkinson’s had issues completing at least one essential daily activity such as getting food. Many respondents had to cancel exercise or social activities — cornerstones of PD care. Some used online classes to continue activities, but people with PD with lower income were less likely to report alternative ways of seeking care. These interruptions, coupled with the need to self-isolate, were associated with worsening of Parkinson’s symptoms, the release explains.

Analysis of the data set was limited to surveys completed between April 23 and May 23, 2020. The COVID-19 survey will be kept open in Fox Insight, however, to capture the evolving experiences of people with Parkinson’s as the coronavirus pandemic continues to evolve. Early respondents also will be re-surveyed in 6 to 12 months for longitudinal analysis, which will help clinicians better understand the long-term implications, per the release.

[Source(s): Michael J. Fox Foundation for Parkinson’s Research, PR Newswire]

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