Impact of Isolation During the COVID-19 Pandemic on the Patient Burden of Parkinson’s Disease: A PMD Alliance Survey

Abstract

Purpose As the COVID-19 pandemic resulted in social restrictions around the globe, this cross-sectional survey aimed to assess the impact of social isolation on self- or proxy-reported symptoms of Parkinson’s disease (PD) during the pandemic. Patients and Methods The survey was distributed among 7109 subscribers of the Parkinson and Movement Disorders Alliance (PMD Alliance) News and Information list and was open only to people with PD (PwP) and care partners (CP, defined as main caregivers of PwP and serving as proxy respondents). No attempt was made to identify PwP and CP pairs. The survey was distributed online using Survey Monkey between 01/06/2021 and 02/27/2021. Respondents were grouped by level of social support from outside of their household during the pandemic (decreased or maintained [ie, the same as pre-pandemic or increased]). Results Of 7109 invited participants, 718 responded to the survey (response rate 10.1%). PwP (self-reports) accounted for 70.6% of respondents and CP (proxy reports) for 29.4%. Decreased social support from outside of the household during the COVID-19 pandemic (58.5% of all responses) was significantly associated with increases in sadness/depression and anxiety, compared with maintained levels of social support (p < 0.0001 for both comparisons). It was also associated with increased burden of several non-motor (decline in memory, problem solving, or communication, p = 0.0009; new or worsening confusion, p < 0.0001; new or worsening delusions, p = 0.018) and motor PD symptoms. Conclusion Decline in social support from outside of the household during the COVID-19 pandemic showed a statistically significant and negative association with the burden of mood and non-motor symptoms of PD. These results call for increased vigilance towards non-motor symptoms in PwP experiencing social isolation and highlight the need for stronger provider focus on encouraging PwP and their CPs to build and maintain social connections and engagements.

A 6-month longitudinal study on worsening of Parkinson’s disease during the COVID-19 pandemic

“…These indirect effects of COVID-19 are more confirmed and may be more common and more harmful than the direct effects of viral infections 1,9,10 . The worsening of motor and non-motor symptoms has been attributed to stress, physical inactivity, pharmacodynamic effects, dramatic changes in routine, and social isolation 11,12 . The impact of stress on PD progression has been previously investigated and proven to negatively affect the course of the disease 1,2,4 .…”

Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease

“…While the pragmatic, stepped-wedge design provided some efficiencies, it also raised the potential for external temporal trends to affect results. Notably, the COVID-19 pandemic began in the last year of study recruitment and could contribute to increased burden for participants receiving PC at this time . The COVID-19 pandemic may have also contributed to fewer referrals from rural practices as the study progressed, possibly reflecting disparities of both general health care and telehealth use by rural populations .…”

“…Notably, the COVID-19 pandemic began in the last year of study recruitment and could contribute to increased burden for participants receiving PC at this time. 51,52 The COVID-19 pandemic may have also contributed to fewer referrals from rural practices as the study progressed, possibly reflecting disparities of both general health care and telehealth use by rural populations. 53 As a pragmatic trial, we could not control, nor perfectly capture, how clinicians incorporated or failed to incorporate PC skills into their practice.…”

Long‐Lasting Impact of the COVID‐19 Pandemic on Patients with Parkinson's Disease and Their Relatives

“…Although social and group activities were resumed, disruptions of medical care continued during times of loosened restrictions. Cross‐sectional studies from the United States, 2 , 6 , 10 , 11 , 12 Europe, 3 , 5 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 and other global regions 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 have demonstrated pronounced worsening of motor and non‐motor symptoms. The number of affected PwP increased over the development of the pandemic: reports ranged from no worsening 26 to over 69% 20 , 21 , 29 during the first global COVID‐19 wave (March 2020–May 2020) to 60% to 83% 3 , 10 , 14 in later stages of the pandemic.…”

“…Cross‐sectional studies from the United States, 2 , 6 , 10 , 11 , 12 Europe, 3 , 5 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 and other global regions 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 have demonstrated pronounced worsening of motor and non‐motor symptoms. The number of affected PwP increased over the development of the pandemic: reports ranged from no worsening 26 to over 69% 20 , 21 , 29 during the first global COVID‐19 wave (March 2020–May 2020) to 60% to 83% 3 , 10 , 14 in later stages of the pandemic. Although our data support previous reports on increasing symptom burden, it also documents the long‐lasting deterioration that spans periods of low SARS‐CoV‐2 incidence rates and minimum disease control restrictions.…”