Table 1.

Theme: impacts of COVID-19 on PD clinical care

Subtheme	Example Quotes
1.1a Health Care Uncertainty	“The appointment has been cancelled. I don’t have anything virtual on the books. I’m supposed to have the operation, a deep brain stimulation. But I imagine nothing will go ahead until it’s more or less subsided, I guess. I’d like to get on with the deep brain stimulation thing, but I can see where their priorities in the operating room, but it would be handy if I knew what timeframe they’re operating under now.” (Participant 406)
	“I couldn’t find it on my calendar because it always reminds me, but I was supposed to have an appointment with her in the next little while, but it’s probably cancelled. I would, I haven’t heard that it was cancelled, or it would be virtual.” (Participant 411)
1.1b Health Care Limitations	‘The private care, um continued, except the morning one had to stop because the people were going to see more than one person. Every time they say, they say something ‘Oh, for two weeks you have to do this’ and then they said ‘Oh no, now it’s eight weeks. Now it’s twelve weeks’ Like originally, I was going to lose the services of the shower for a month and then it turned into this twelve weeks, and now its turned into forever, as far as I can tell.” (Participant 413)
	“And with Interviewee and with his Parkinson’s, no one, his, um, neurologist, I felt that they could have, maybe should have from their office sent out an email ‘cause they have all our stuff, saying hey just wanted to touch base with what about and maybe this is what you’ve, you know, need to kind of, um, educate yourself with.” (Participant 421’s spouse)
1.2a Pharmacy and Medication Availability: Dispensing Fees	“I am annoyed that I can only get 30 days of medicine at a time. So now it’s been a change. So, it’s been annoying to have to get them every 30 days. Well, they have to pay the dispensing fee. If you get three months’ worth for $20 a year, you get one-month worth for $20. 20 jumps to 60 for one medicine.” (Participant 406)
	“So cutting it to only one month is- is fine. The doctor gives me three months, and I can say it’s only, it’s only down, uh, the road from here. But first I was thinking it was going to cost me more, but it actually, the- the dispensing fee, if I got it three months’ worth, was one price and if I, um, got just one month at a time, the, with the [insurance], it comes out about the same, so…” (Participant 411)
	“Well, it’s, um, taking it every month. My medical plan had to change their limits to what they will pay the pharmacy. So, and they did. Uh, they changed it from five times, um, a, a year to 15, so that, so that they would pay for, um, the prescription every month, uh, and the charges by the pharmacy.” (Participant, 413)
1.2b Pharmacy and Medication Availability: Routine Change	“The only problem is … It depends on the week, right? If I wait until I’ve got to go back grocery shopping again, which is every two weeks, I might be able to pick my medications up at the same time and that’s all okay, but if I run out someday before I’ll have to go on another day to the store and other than when I would normally go, but I go once every two weeks normally, if I got to go twice in the same period that’s a little bit of a challenge, but that’s okay, I guess.” (Participant 400)
	“No, that, that a, we get our medication, I get my medication through the Pharmacy and, uh, and I just phone them and they send down a month’s worth of my prescriptions. No problem, no, they deliver it to the condo. And it’s not an inconvenience inasmuch as I can go down and pick it up if I, if I want to or I can just have it delivered so it’s not really an inconvenience. No.” (Participant 419)
1.3a Virtual Medicine: Facilitators	“Um, so I had another telephone inter, telephone, on Friday, so there’s, there’ve been two, and both were informative and good, and certainly it was impossible for me to get to their office. There was no way I was going to be able to get out of the house, into their offices. So this was good to be able to be in contact with them. Don’t want to go anywhere near (laughs) a doctor’s office. I would pre- much prefer another telephone, um, appointment.” (Participant 413)
	“It went fine and actually it works quite well because he was, um, my neurologist was able to, uh, look at me and- and you know, have me do the, the, um, arm motions and so forth which- So sh- the only thing she couldn’t do was sometimes, you know, she actually will take one of my arms and move it around herself, which that wasn’t an option. But everything else, I think, was, worked quite well on Zoom. And, and it, it felt, um, you know, it just was so much easier than, than, you know, going over and trying to find a place to park and waiting in the waiting room and all that. To do it from home took a- actually took away a lot of the stress…of going to an appointment.” (Participant 417)
1.3b Virtual Medicine: Barriers	“Um, I think with virtual one of the problems on virtual that you end up speaking at the same time and then somebody stops, you start it, and you stop, and you have to wait and there’s, there’s no, like there’s no management of, uh, when you’re d-, doing, doing face-to-face, you know when a person’s been speaking, and you know you’ve started before they have. But I find that in virtual re-, uh, that virtual kind of stuff, it all becomes quite static. Uh, not static, but staccato. It just is like okay, you start talking. I can’t talk, and then you stop, and I stop, and then who goes first and then, and so I don’t like the, the rhythm to it. Or, uh, I need the body language, I need the eyes, I need, uh, I want to feel, but you don’t feel through the virtual, uh, I want to feel wh-, whether his response is right. Whether he’s hearing me, was he listening to me? I mean, was he looking at me, sort of, of those kinds of things. So, I would never be a fan of the virtual. I would take it over nothing.” (Participant 415)
	“So yeah, I thought it was quite well, uh, well. It wasn’t like, uh, video. It was strictly over the phone. And ultimately, uh, you know, I would think, uh, that in person was a better way to go, for a number of reasons. But you know, it worked out pretty good yesterday. Uh, well, just judging on, you know, just recent, uh, I- I wouldn’t say there’s much of an effect. Like I say, I do think it would be better to be in person to have that physical contact- And, uh, the visuals.” (Participant 405)
	“I think I can convey all the questions I have. I guess the only disadvantage, well, there’d be two disadvantages. One would be I often put together some material for my neurologist to read, like my current state, what’s the situation with my various symptoms, what I’ve been able to do to overcome them. I like to share that with her. It’s simple. You just put it down on a piece of paper and have her read it rather than me try to articulate. That’s one disadvantage, I guess. But presumably there’ll be a method of sharing it before the Zoom interview.” (Participant 403)
1.3bc Virtual Medicine: Recommendations	“One of the things that I’m urging them to do is to set up a secured email service. Because that would give me an ability to let them know right away the impact of some medication changes rather than wait for the next meeting or try to do it through some other mechanism. My family doctor has it set up. So if I have a question for my family doctor, I just have to email on this secured service and they get it to him and he gets back to me. He’ll get back to me and answer my questions and in some cases we haven’t had a need to talk because he’s been able to answer my questions online. I think all parts of the health care group should be able to have a secure email service. I’ll bet you it cuts down on the amount of time that doctors spend with patients because you know yourself, if you sit down person to person with somebody, you ask about the weather. You ask about the family. You always kill some time but with email you’re forced to be fairly precise. So it’s a lot faster than having a 15 min appointment.” (Participant 403)
	“I think it would be useful if the doctors did use, um, you know, Zoom because then you can look me in the eye to some degree, and look them in the eye.” (Participant 410)
	“I think one thing they need to do there is, uh spend money and get a cell phone. Then we could send them you know, face to face. You can just call on our iPhone, just so long as they have, uh, have technology on their phone and then you just put it on, uh face to face, whatever they call it, where we can see each other. It’s just a click of a switch and, and the push of a button and, and you could be seeing each other, just like you were sitting at the table across from each other, and it’s uh, it’s easy.” (Participant 420)
1.4 Absence of Motor Examination	“If that’s important to them to track the progress of the symptoms, then it’ll be difficult for them to do that in a virtual method. I never thought it was that useful anyway. Well, it’s probably important to the doctor to use it as a tracking mechanism, but it never really did much for me. I’ve been able to do some things well beyond the normal Parkinson’s stuff. The disadvantage, I suppose, would be from her point of view, she’s not able to… She loves to watch me walk. It’s part of the assessment, so I can’t show her my stuff, that I’m walking probably better than I was in the last visit even. It wouldn’t bother me if we didn’t even do it. It doesn’t do anything for me and I’ve kind of taken care of my motor symptoms with this exercise program, which was endorsed by my neurologist.” (Participant 403)
	“You know, it was just pretty much the same as having a, uh, one-on-one visit. The only thing was he couldn’t physically see how I was responding and walking and stuff too well, but other than that, uh, you know, it was certainly adequate. Uh, we have this long enough encounter… close enough relation with our doctors that we kind of understand each other and so it was, it was fine. It was… uh, no issues there, I don’t think. It was, uh, effective, I think.” (Participant 420)
1.5a Worsening of Motor Symptoms	“Well, uh, actually, my, uh, my motor symptoms have now I’ve gotten, uh, worse since this, uh, difficult, since the pandemic. Yeah, that’s, uh… My Parkinson’s worse, uh, than it was. I’m worse. I didn’t have that before. In fact, it feels different. I don’t like it, you know, necessarily that. Uh, like I’ve gotten worse and I’m hoping they don’t, uh… I’m hoping when this thing passes, they go back to the way they were. Well, I take medication five times a day, and, uh, sometimes between those times I take it, I, I- off times they call it. And the drug didn’t, didn’t affect it, and they are…they are more severe during the off times. They’re often much more now. Make me feel a lot worse than they used to. It varies, uh, a lot. Some days are… Some days or the on day, I really feel good on it. That, that’s rare. But it’s hard to say an average, ‘cause, uh- It varies. You know? But I, I often have two or three hours on the day that, um, I’m not feeling very well.” (Participant 409)
	“You know, you have, you have been off a little more. We haven’t really related it to that, uh, but it could be some of the stress. Yeah, it could be anxiety or… we have had to give quite a few extra doses on some nights it’s just that is (laughs) pretty dry, so… we didn’t really think of it that way, but it could be.” (Participant 414’s spouse)
	“Um, yeah, this whole thing gets me anxious, and when it does that, like, um, if I’m nervous or something is going on, I tend to shake a little bit more. Um, mainly on my left side. But um, once I get… But the same thing is if I was watching sports, my team’s there, the s-, I get the same reaction is not a- anxious there, but I’m excited, so I… get the- the same movement happens there. So, but um, I- I do know in the last, um, it… In the last, um, I guess maybe since this whole virus came about, I do notice that either my medication doesn’t last as long or I’m getting worse, ‘cause the, you don’t know the disease itself how it works, so… I- I still haven’t changed… I’ve changed timing of it a little bit, but I haven’t really taken any more, ‘cause I was set to have, um, the levodopa four times, four times a day… two halves two times a day. But for the longest time, I was only taking one at each of those times. They gave me long, uh, long, reoccurring ones as well. So that was spaced out, so I wasn’t even using the- the eight full tabs a day, so. But now I’m doing it a little more often.” (Participant 411)
1.5b Worsening of Non-Motor Symptoms	ANXIETY AND STRESS
	“I have a general, I have a general angst about the, about the COVID19 in that I’m 76 and therefore in the elderly bracket, which, and I’ve got diabetes so uh, that puts me at a greater risk and I’m I have a general anxiety about that.” (Participant 402)
	“Yeah. I don’t know whether it’s Parkinson’s related or not, but I’m more anxious because of the things going on the pandemic and the influence that’s had on the economy of our country and province.” (Participant 403)
	“I actually did find I lost weight for a while there. I think it was probably stress-related. Now that it seems to be settled into a new routine, I think there’s still some stress, but it’s less stressful than it was.” (Participant 401)
	MOOD
	“Um, it’s interesting, I don’t s-, really feel any more depressed with this going on. It d-, uh, it, a couple of days it gets a little discouraging ‘cause you- you just can’t, you want to get out of the house.” (Participant 411)
	“Well, it might be what I’m kind of battling or kind of … I feel quite down sometimes, but it … I, I attribute it to the fact I can’t … Frustrating not being able to do what you think you should be able to do.” (Participant 416)
	FRUSTRATION, ANGER, AND IRRITABILITY
	“Uh, I don’t know if it’s because of the pandemic, but I feel a little bit more uptight. You know? Um, I, I get angry sometimes a little easier over something stupid, you know. But, but, yeah, I just feel a little bit anxious.” (Participant 414)
	“Um, I, I’ve noticed that your, your mood is a little better, right? When you were, when it was cool and, um, in the beginning I, I noticed, you know, I think you were a little more, um, you would probably feel more frustrated and, you know, a little more short and those kinds of things because you were cooped up in the house all the time, right?” (Participant 414’s Spouse)
	SLEEP
	“Oh, the only thing I have a little bit more problem sleeping at times, I think, it’s a little tougher to sleep. I’ve found that. More of a broken sleep. If I wake up, it’s hard for me to get back to sleep.” (Participant 400)
	“Other than, maybe a little more variable from day to day. Some nights I have, you know, trouble falling asleep. Other nights, it’s, depending on who knows, whether it’s what I’m eating or, you know, some of it’s just variable. Like last night I had real trouble sleeping. And there was really nothing particularly on my mind, it’s just, you know, it’s physiologically, uh, you know, somewhat different from day to day.” (Participant 410)
	“Oh yeah. My sleep quality is… it was poor before, but it’s worse now. And it’s scary, and there isn’t anyone out there to help, help me, and if I, if I had a problem, I, I understand completely why people don’t go anywhere near the ER. You don’t want to go (laughs). It’s just really hard to get rested.” (Participant 413)