Objective: To rapidly identify areas of need and improve care in people with Parkinson's disease (PwPD) affected by the COVID-19 pandemic, we deployed a survey focusing on the presentation and complications of COVID-19 infection and the effect of the COVID-19 pandemic among those not infected.
Methods: Individuals with and without PD participating in the online study Fox Insight (FI) were invited to complete an online survey between April 23-May 23, 2020. Among people reporting COVID-19 diagnosis, we compared the frequency of symptoms and poor outcomes in people with and without PD. Among people not reporting COVID-19, we assessed the effects of the pandemic on access to medical care and other services, and in PwPD, its effects on PD symptoms.
Results: Among 5,429 PwPD and 1,452 without PD, 77 reported a COVID-19 diagnosis (51 PwPD, 26 without PD). Complications were more frequent in people with longer PD duration. PwPD and COVID-19 experienced new or worsening motor (63%) and nonmotor (75%) PD symptoms. PwPD not diagnosed with COVID-19 reported disrupted medical care (64%), exercise (21%), and social activities (57%), and worsened PD motor (43%) and non-motor (52%) symptoms. Disruptions were more common for PwPD living alone, and for those with lower income and non-white race.
Conclusions: The COVID-19 pandemic is associated with wide-ranging effects on people with PD, and certain groups may be at particular risk. FI provides a rapid, patient-centered means to assess these effects and identify needs that can be used to improve the health of PwPD.