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Most Parkinson's disease patients who had COVID-19 reported new or worsening motor and non-motor symptoms, survey data from the Michael J. Fox Foundation for Parkinson's Research showed.

And among Parkinson's patients not infected with the virus, nearly two-thirds also reported adverse effects from the pandemic: canceled healthcare appointments, reductions in home care, or difficulty obtaining medications, according to Caroline Tanner, MD, PhD, of the University of California San Francisco, and co-authors in a manuscript published on the preprint server.

The findings represent the first and largest self-reported data set to date about Parkinson's disease symptoms and care disruptions during the COVID-19 pandemic. "This is quite useful because it gives us insight into the patient's own experience," Tanner said in an interview with 乌鸦传媒. "Pretty much everyone had a worsening of Parkinson's symptoms if they were also infected with COVID-19."

"That isn't exactly surprising because we know when people get other infections, their Parkinsonism worsens," she noted."But it's relevant for us to have this in mind, so it's part of what we're thinking when we hear patients talk about sudden worsening."

The survey was part of the online clinical study, which first was launched in 2017 to give neurologists and researchers a window into the experience of people with Parkinson's. To date, Fox Insight has enrolled nearly 50,000 participants and has the largest cohort of patient-reported outcomes in Parkinson's research.

From April 23 to May 23, 2020, Fox Insight participants were invited to complete an online survey; a total of 5,429 Parkinson's patients and 1,452 people without Parkinson's responded. Of these, 77 people reported a COVID-19 diagnosis, including 51 Parkinson's patients.

During SARS-CoV-2 infection, the majority of Parkinson's patients experienced new or worsening motor symptoms (63%) and non-motor (75%) symptoms, including stiffness, tremor, difficulty walking, mood symptoms, cognition, and fatigue.

Among all respondents with COVID-19, outcomes were largely similar between people with and without Parkinson's. Longer Parkinson's disease duration was associated with a higher risk of pneumonia, the need for supplemental oxygen, or hospitalization (44% for disease duration greater than 9 years vs 14% for disease duration of 9 years or less).

"What was really remarkable was the number of people who didn't have COVID, but who did suffer from the experience of the pandemic," Tanner noted. Medical care (64%), exercise (21%), and social activities (57%) were disrupted for these patients, and many reported worse Parkinson's motor (43%) and non-motor (52%) symptoms.

New-onset motor symptoms in particular were more likely in Parkinson's patients who had disrupted medical care (8.2% vs 5.1%; adjusted OR 1.63, 95% CI 1.31-2.04; P<0.001). Patients who experienced interruptions to exercise, social activities, or who were asked to self-isolate also were more likely to report worsening of Parkinson's symptoms.

Disruptions in healthcare were more common for Parkinson's patients who lived alone and for those with lower income and non-white race. Non-white race and lower household income also were independently associated with difficulty obtaining medications. People with lower income were less likely to find alternative ways to exercise and engage in social activities and were less likely to use telemedicine.

While the survey showed the resilience of the Parkinson's community, it also highlighted disparities, Tanner pointed out. "People with lower incomes or people who are nonwhite have less opportunity to use alternative means of health care and connection," she said. "That's something we continue to need to work on."

The study had several limitations, the researchers acknowledged. It relied on self-reported data and was limited to people healthy enough to complete an online survey. Certain populations may be under-represented; in particular, findings among low-income and non-white populations may vary.

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