The impact of COVID-19 and social distancing on people with Parkinson's disease: a survey study

Abstract

As the COVID-19 pandemic continues to affect the international community, very little is known about its impact on the health and day-to-day activities of people with Parkinson's disease (PwPD). To better understand the emotional and behavioral consequences of the public health policies implemented to mitigate the spread of SARS-CoV-2 in PwPD, and to explore the factors contributing to accessing alternative health care mechanisms, such as telehealth, we administered an anonymous knowledge, attitude, and practice survey to PwPD and care partners, via the mailing lists of the Parkinson's Foundation and Columbia University Parkinson's Disease Center of Excellence with an average response rate of 19.3%. Sufficient information was provided by 1,342 PwPD to be included in the final analysis. Approximately half of respondents reported a negative change in PD symptoms, with 45-66% reporting mood disturbances. Telehealth use increased from 9.7% prior to the pandemic to 63.5% during the pandemic. Higher income and higher education were associated with telehealth use. Services were more often used for doctor's appointment than physical, occupational, speech, or mental health therapies. Almost half (46%) of PwPD preferred to continue using telehealth always or sometimes after the coronavirus outbreak had ended. Having received support/instruction for telehealth and having a care partner, friend, or family member to help them with the telehealth visit increased the likelihood of continuous use of telehealth after the pandemic ended. Taken together, PD symptoms and management practices were markedly affected by COVID-19. Given the observed demographic limitations of telehealth, expanding its implementation to include additional physical, occupational, psychological, and speech therapies, increasing support for telehealth, as well as reaching underserved (low income) populations is urgently required.

Fig. 1. Participant representation by COVID-19 per capita infections as of May 27, 2020.

US geographic location stratified by cumulative numbers of confirmed COVID-19 cases per capita (per 100,000) within that state as of May 27th, 2020; representing a total of 1,292 participants. Highest 25th percentile, >570 cases per 100,000; between 25th and 75th percentile, 200–750 cases per 100,000; lowest 75th percentile, <200 cases per 100,000. Darker states indicate higher per capita infections of COVID-19. Gray dots reflect survey participant locations. Red dots reflect the location of a Parkinson’s Foundation Center of Excellence, a medical center specializing in the care of people with Parkinson’s disease.

Fig. 2. Flowchart of data cleaning approach.

PwPD people with Parkinson’s disease.