The study also found that patients with PD that used telehealth for mental health services were less likely to prefer telehealth over in-office visits.
Megan P. Feeney, MPH
Data from a recent survey conducted by the Parkinson’s Foundation, the Movement Disorders Division of the Department of Neurology at Columbia University Vagelos College of Physicians and Surgeons, and the New York-Presbyterian/Columbia University Irving Medical Center has revealed disparities in telehealth use between income and education levels in people with Parkinson disease (PD).1
Overall, telehealth use for surveyed patients (n = 1342) increased from 9.7% prior to the pandemic to 63.5% during. Household income >$100,000 per year was associated with the highest amounts of telehealth use (odds ratio [OR], 1.54; 95% CI, 1.06–1.76), as was postsecondary education (OR, 2.05; 95% CI, 1.16–3.62), and telehealth use prior to the COVID-19 pandemic (OR, 2.27; 95% CI, 1.34–3.85).
"There is little doubt that the stress from COVID-19 and the limitations of social distancing affect everyone negatively, including people with PD. The survey highlights PD-specific issues and potential coping mechanisms, including online social support and telemedicine to reduce the burden caused by the pandemic," senior author Roy Alcalay, MD, MS, Alfred and Minnie Bressler Associate Professor, neurology, Taub Institute, Columbia University Vagelos College of Physicians and Surgeons, and associate attending neurologist, New York-Presbyterian/Columbia University Irving Medical Center, said in a statement.2
"The survey findings support that remote medical care can be very useful in these times and may be helpful to people with PD even after the resolution of the pandemic," Alcalay added.
Alcalay and colleagues, including first author Megan P. Feeney, MPH, associate director, community engagement, Parkinson’s Foundation, analyzed responses from a survey population with a mean age of 71 years (range, 32–93), 679 (50.6%) of which were women. Most respondents (n = 1216; 90.6%) identified as white, 32 (2.4%) reported more than 1 race, and 32 (2.4%) identified as Hispanic Latino. Postsecondary education was reported by 1257 (93.7%) individuals, and 1010 (75.3%) of respondents were retired.
The mean age of PD onset was 64 years (range, 21–91) and the average disease duration was 7 years (range, <1–52). Levodopa as monotherapy was reported by 720 (53.7%) respondents and combination therapy was reported by 484 (36.1%). Most respondents (n = 1292; 96.3%) were in the US and represented states of the US at different levels of COVID impact. Roughly one-third (n = 418; 31.1%) of respondents were from states within the highest quartile of cumulative confirmed COVID-19 cases per capita as of May 27, 2020.
COVID-19 diagnosis was reported in 17 (1.3%) respondents, although only 5 confirmed diagnosis by testing. Fatigue was the most common COVID-19 symptom, reported by 12 respondents (70.59%), followed by muscle pain and body aches (both n = 10; 58.82%), then cough (n = 9; 62.94%), headache (n = 8; 47.06%), and shortness of breath (n = 8; 47.06%). The mean COVID-19 disease duration was 13.5 days.
More telehealth appointments were for doctor’s appointments (n = 777; 91.2%) rather than physical (n = 142; 16.7%), occupational, speech, or mental health therapies (n = 162; 19%). Around half (n = 617; 46%) of all respondents reported that they would prefer to continue using telehealth always or sometimes after the end of the pandemic. This preference was associated with the use of telehealth service before the pandemic (OR, 2.30; 95% CI, 1.47–3.59); having received support/instruction for telehealth (OR, 1.51; 95% CI, 1.03–2.21); and having a care partner, friend, or family member to help them with the telehealth visit (OR, 1.40; 95% CI, 1.03–1.91). The use of telehealth for mental health services was a negative predictor of preference for use after the pandemic (OR, 0.31; 95% CI, 0.13–0.76), which Alcalay and colleagues noted suggests that these services must be improved.
More than 85% of respondents felt that their personal life had changed during the pandemic, and reported concerns of “Being infected myself,” “Being at an increased risk of infection because of PD,” and “Being infected and requiring intensive hospital care.” More than half of respondents (59.9%; n = 804) canceled a doctor’s appointment during the pandemic; 443 (55%) were provided with telehealth or virtual medical appointment options, and 307 (38.2%) participated in a telehealth visit in place of the canceled appointment.
Feener and colleagues saw that 616 (45.9%) reported a negative change in PD symptoms. However, 867 (64.6%) reported no negative change in their relationship with members of their household and 999 (74.4%) reported no negative change in the frequency of their communication with others. Social support sources were reported and 957 (71.3%) listed household members, 653 (48.7%) listed friends or family via phone/video, and 19 (14.5%) listed in-person visits.
Only 131 (9.7%) respondents had used telehealth prior to the pandemic. Video app or smart phone appointments were reported by 228 (30.6%), personal computer video by 289 (38.8%), and phone audio by 212 (28.5%). Routine PD visits made up 456 (61.2%) appointments and urgent PD visits made up 26 (3.5%). Respondents were equally (n = 407; 54.6%) or more (n = 94; 12.6%) satisfied with their telehealth visit with a doctor compared to in-person visits.
Feeney and colleagues also found that feelings of hopelessness or depression were associated with telehealth use (OR, 1.27; 95% CI, 1.01–1.58), but the effect did not remain significant after adjusting for other variables. Employed respondents were more likely to use telehealth than unemployed respondents (OR, 0.46; 95% CI, 0.26–0.81). There were no utilization differences between respondents that were retired and unemployed or on disability.
Reduced exercise was reported by 600 (44.7%) of respondents and 978 (72.9%) reported a reduction in activities outside of the residence, such as exercise or wellness classes, support groups, recreational classes, and educational events, among others. Virtual attendance was high, as 1099 (81.9%) respondents reported these activities were available virtually and 999 (91.9%) of those respondents attended.
Feeney and colleagues found that 893 (66.5%) reported nervousness or anxiety, 683 (50.9%) reported feeling down or disturbed, 720 (53.7%) reported reduced interest or pleasure in doing things, and 888 (66.2%) reported sleep disturbances in the last 6 weeks prior to the survey. Women were more likely to experience feelings of nervousness, anxiousness, or being on edge (OR, 1.81; 95% CI, 1.31–2.50). Other predictors were self-identification as white (OR, 1.82; 95% CI, 1.07–3.12), and having reduced exercise (OR, 1.41; 95% CI 1.03–1.94).
Negative predictors of nervousness or anxiousness were a household income of >$100,000 per year (OR, 0.63; 95% CI, 0.41–0.98) and being retired compared to being unemployed or receiving disability (OR, 0.43; 95% CI, 0.22–0.83). Sleep disturbances were associated with being female (OR, 1.49; 95% CI, 1.08–2.05) and levodopa use (OR, 2.23; 95% CI, 1.39–3.58).
"During these unprecedented times, this survey helps us better understand how we can support the PD community and meet their needs as the pandemic continues to impact their health and wellbeing," John L. Lehr, president and chief executive officer, Parkinson's Foundation, said in a statement. "This survey further validates our mission to make life better for people with Parkinson's disease and ensure they have access to the resources and information they need from the comfort and safety of their homes."