Discussion

This study uniquely portrays how the COVID-19 pandemic changed healthcare experiences for PwP in Canada. Overall, we found that experiences with care significantly deteriorated during the COVID-19 pandemic for PwP. Participants were less satisfied and had greater difficulty obtaining healthcare compared to the pre-COVID-19 pandemic. Those with barriers to accessing care pre-COVID-19 pandemic and/or difficulty obtaining pre-pandemic carte were more likely to experience dissatisfaction, increased difficulty obtaining healthcare, and unmet care needs during the COVID-19 pandemic. Thus, focusing on reducing barriers to accessing care will be important moving forward in a post-COVID-19 pandemic era. The most cited barriers to accessing care were difficulty getting an appointment, increased wait times between referral and appointment, and difficulty in getting a referral. Prolonged wait times are an unfortunate reality of the Canadian healthcare system. ^{Reference Thind, Stewart and Manuel13} Strategies to enhance well-being during prolonged wait times have been studied in migraine, and an educational intervention was shown to be associated with less migraine associate disability, decreased emergency department visits, and reduced medication and narcotic overuse. ^{Reference Lagman-Bartolome, Lawler and Lay14} Thus, focusing on patient education in PD may be helpful moving forward as patients wait for their specialist appointments, which was suggested in our study, with participants recommending easier access to available educational resources (e.g., Parkinson Canada). Additionally, increased education on PD for primary care providers (PCPs) might increase the ease of referral to a movement disorders specialist or general neurologist and optimize the initiation of initial management strategies by PCPs.

Data from other countries looking at healthcare experiences of PwP during the COVID-19 pandemic have found disruptions of care, worsening of PD symptoms, and/or reduced quality of life. ^{Reference Brown, Chahine and Goldman7,Reference Anghelescu, Bruno, Martino and Roach15,Reference Guo, Han and Lu16} Survey data from 9762 participants, including 5429 PwP in the United States, demonstrated that, for all comers, 62% had experienced disruption in healthcare, including cancelled appointments, reduced in-home care, or difficulty obtaining medications during the pandemic. ^{Reference Brown, Chahine and Goldman7} Compared to our study, their data showed an effect of demographic factors: race and lower income were independently associated with difficulty obtaining PD medications. ^{Reference Brown, Chahine and Goldman7} Thirty-five per cent of PwP had at least one daily activity disrupted, which was more common in those living alone. Additionally, 21% had cancelled exercise classes, and 57% had cancelled social activities; PwP with lower income were less likely to report alternative means of exercise or social activities, and older PWP were less likely to use alternative ways to exercise. ^{Reference Brown, Chahine and Goldman7} Further investigations into the effect of these demographic factors on other measures of healthcare experiences during the COVID-19 pandemic in the Canadian population are needed.

The use of virtual care in the management of Parkinson’s disease is promising. The beneficial role of virtual care in increasing access to care for PwP residing in British Columbia has been recognized in a patient survey, namely for accessing mental health resources. ^{Reference Peacock, Baumeister, Monaghan, Siever, Yoneda and Wile17} In addition, it was found that an interest in virtual care utilization correlated with perceived barriers such as lack of community services and healthcare providers' insensitivity to PD-related issues. ^{Reference Dobkin, Rubino, Friedman, Allen, Gara and Menza18} Furthermore, it was shown that motivation to access specialty services would be increased if patients could access them from the comfort of their own homes. ^{Reference Dobkin, Rubino, Friedman, Allen, Gara and Menza18} Additionally, there has been increasing interest in virtual assessment of motor features of PD allowing for more frequency and accurate assessment of motor function, including use of wearable technology such as smart watches. ^{Reference Burq, Rainaldi and Ho19} Finally, a recent meta-analysis has shown that with respect to PD severity, compared with usual care, telehealth intervention was beneficial in lowing motor impairment significantly. ^{Reference Crawford and Serhal20} Based on our data, most patients used virtual care during the COVID-19 pandemic, endorsing access to the required technology and technical support when needed. A focus on improving patient confidence in the remote assessment of a condition and its treatment will be important. ^{Reference Shalash, Spindler and Cubo10} Additionally, addressing technological limitations (i.e., lack of high-speed internet), validating remote assessment of PD, and addressing privacy concerns should be a focus moving forward. An important factor to be mindful of is that while virtual care has been rapidly implemented to provide unique healthcare solutions to address the challenges with healthcare delivery during the COVID-19 pandemic, there may be unintended negative effects on health equity (19). ^{Reference Burq, Rainaldi and Ho19} Poverty, lack of access to digital health, poor engagement with digital health for some communities, and barriers to digital health literacy are some factors which may have contributed to discrepancies in health outcomes during the COVID-19 pandemic ^{Reference Crawford and Serhal20} and will require further scrutiny in a post-COVID-19 era of increased uptake of digital health for care delivery. In keeping with this, survey data from the United States showed telemedicine were used by 39% of PwP during the COVID-19 pandemic; however, those with lower household income were less likely to attend appointments through virtual care. ^{Reference Brown, Chahine and Goldman7}

As a cross-sectional online survey, a few study limitations should be mentioned. First, participation in this online survey required that PwP or their caregivers had access to and a reasonable understanding of the internet, which is more common in younger populations. We suspect that individuals with later-stage PD (and thus those later in the disease course) have greater accrued disability which may limit access to the Internet and thus knowledge of and participation in our survey. For this reason, our sample is likely skewed towards younger and less advanced stage PwP compared to the Canadian PwP population, consistent with our collected demographic data indicating that the majority of participants were in early stages of PD. ^{Reference Butt, Tu and Young21,Reference Wong, Gilmour and Ramage-Morin22} This limits the applicability of our findings to PwP who have more advanced disease. Second, although recruitment was conducted through Parkinson’s Canada, a national organization which provided excellent access to its membership, membership and involvement are likely not equally strong in all regions. This is reflected in the regional distribution of the sample with a greater representation of the provinces of Ontario and Quebec. Finally, we had less representation from non-Caucasian populations.