These are some of the conclusions of a survey conducted by the Parkinson’s Foundation, in collaboration with Columbia University, that revealed key gaps in patients’ healthcare needs related to stress, anxiety, the loss of physical activity, and socioeconomic disparities, among other factors.
At the same time, a strong and possibly long-term rise in telehealth use suggested that these gaps could be best filled by improving telemedicine services.
The study based on survey results, “The impact of COVID-19 and social distancing on people with Parkinson’s disease: a survey study,” were published in the journal npj Parkinson’s Disease.
The U.S. survey, conducted by email between May and June 2020, assessed the pandemic’s impact on patients’ health and daily activities in by asking people with this disease how pandemic-related changes had affected their physical and emotional well-being, their mood, daily habits, and use of telehealth.
Researchers received 1,342 completed responses, with patients at a mean age of 71 (mean age of 64 at diagnosis) and evenly divided between men and women. Among them, 17 respondents (1.3%) reported being diagnosed with COVID-19 by their doctor, and five of these cases were confirmed through testing.
A sizable percentage, 38.5%, of respondents voiced being greatly concerned about becoming infected with this new virus and needing intensive hospital care.
A vast majority — 85% — felt their personal life had changed due to the pandemic and its demands.
Approximately two-thirds reported general nervousness or anxiety, most often attributed to both the fear of becoming infected and to not knowing when the pandemic might end.
Slightly over half (51%) felt depressed, most often due to being unable to see friends and family, or to have physical contact with them. A history of depression unrelated to COVID-19 emerged as the second strongest factor driving depression.
Roughly two-thirds of respondents (66%) complained of sleep disturbances over the six weeks leading up to the survey. These people largely attributed these disturbances to either problems unrelated to the virus (36%) or to worries that were related (34%).
Slightly over half (54%) of participants reported losing interest or pleasure in doing things. They often blamed this on being unable to leave their home (14%), having already lost interest prior to the pandemic (14%), or to negative feelings about the future (13%).
Women were more likely to experience all these symptoms than were men, with the exception of a diminished interest or pleasure in doing things.
People also felt the pandemic’s impact differently depending on their socioeconomic status, with lower-income respondents (annual household income under $50,000) more affected by financial and employment uncertainties.
Reported mood symptoms did not vary by home location, suggesting that even low-risk communities feel the psychological effects of the virus on everyday life.
“Interestingly, factors such as geographic location and thus severity of COVID-19 outbreak in a given area were not associated with our measured mood symptoms, suggesting that communities deemed at lower risk of community spread are not immune from the overwhelming influence of the COVID-19 pandemic on everyday life,” the researchers wrote.
Almost half of the survey takers (45%) reported exercising less throughout the pandemic, and close to three-quarters (73%) did fewer activities outside their homes. Most respondents, however (82%), found online activities and 92% of those who did participated in them. Activities included exercises classes, support groups, recreational classes, and religious or educations services.
The pandemic sparked a notable shift to telemedicine within the Parkinson’s community, with its use rising to 64% from 10% prior to the outbreak. People used telehealth most often to keep a medical appointment with their Parkinson’s specialist. Other uses included mental health visits, physical therapy, speech therapy, and occupational therapy.
Most were satisfied with the experience, and a near majority expressed interest in continuing to use telemedicine.
Patients “were equally (54.6%, n = 407) or more (12.6%, n = 94) satisfied with their telehealth visit with a doctor compared to in-person visits, and 363 (48.7%) of them would likely use telehealth sometimes or always after the pandemic had ended,” the study noted.
These results highlight several unmet needs within the Parkinson’s community. Expanding telemedicine services to include more physical, occupational, psychological, and speech therapies could address these, while also reaching more underserved populations.
“There is little doubt that the stress from COVID-19 and the limitations of social distancing affect everyone negatively, including people with [Parkinson’s],” Roy Alcalay, MD, a professor of neurology at Columbia University, said in a press release.
“The survey highlights [Parkinson’s]-specific issues and potential coping mechanisms,” he added, “including online social support and telemedicine to reduce the burden caused by the pandemic.”
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