The first and largest self-reported data set detailing the lived experience of the COVID-19 pandemic on the Parkinson disease (PD) community has been released.
The survey validated previously reported effects of the pandemic on individuals living with chronic disease, especially Black, Hispanic, and Asian individuals. Of respondents, 62% reported canceled health care appointments, involuntary reductions in needed in-home care, or difficulty obtaining medications. The health care disparities caused by racism and lower socioeconomic status 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 individuals with PD had issues completing at least 1 essential daily activity such as getting food. Many respondents had to cancel exercise or social activities, which are 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 PD symptoms.
The survey, which remains open in Fox Insight, was designed in consultation with a group of 9 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.
"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," says Fox Insight principal investigator Carlie Tanner, MD, PhD, professor of neurology at the Weill Institute for Neurosciences, University of California, San Francisco. "This is why Fox Insight exists, to meet patients where they are and to use their experiences to transform our understanding of PD."
F. Stephen Benesh, MD, and Shruti P. Agnihotri, MD
Fabio Fieni Toso, MD; Rene de Araújo Gleizer, MD; and Lívia Almeida Dutra, MD, PhD
Bettina Balint, MD