TABLE 2.
Content areas and examples of the negative impacts of the COVID‐19 pandemic provided by participants
| Content area | Examples generated by participants | Exemplary quote |
|---|---|---|
| Barriers to treatment | Disruption to in‐person services (e.g., unable to get onabotulinumtoxinA, nerve blocks, acute injectable treatments) | “I did try Botox. But I only had one round of those. It was one treatment. And then, three months later, COVID started, so Botox—that’s the only thing. The reason we switched to Emgality was because I can’t go in person to the doctor. They’re not—they weren’t accepting visits for Botox, so—yeah” |
| Difficulty obtaining a new health‐care provider as former providers retired or left their practice during the pandemic | “I’m between three clinicians, actually, because of COVID−19. So I was—my first clinician left the practice. And I was between providers, trying to see a new one. And that was scheduled to be in March, and then got transitioned to telehealth, and then that provider left the practice. So I’m now between the provider that I saw for telehealth in March and seeing the next provider, which I actually see this week” | |
| Delayed and/or backordered prescriptions | “But during the heat of the pandemic, my medications were delayed. Sometimes the pharmacy couldn’t get their shipments in or whatever else, and so I would be delayed getting my preventative or any of my migraine‐related prescriptions, which was not the best thing” | |
| Desire to avoid visiting urgent care centers and emergency departments | “I am not going to the hospital as much, because it’s riskier than normal. So that’s some of the only like big changes is that I refuse the majority—unless it’s like super, super‐bad, I’m not going to the hospital. I’ll just tough it out and be with it or something” | |
| Perceived reasons for increased migraine attack frequency and severity | Disrupted access to preventive treatments (e.g., onabotulinumtoxinA injections) and therapies (e.g., physical therapy) | “When it first started, we had went down to XXXX to visit our family, and then it had broke out, and we were stuck there for a little bit because they were not allowing people through certain places. And I missed my Botox by about—I think it was three weeks late, by the time I was able to come back and get in and get it done. And it, of course, was worse. I was getting them every—back to every other day again, the way I was before” |
| Increased stress and anxiety | “I think going out is more anxiety provoking to me than before COVID. And as my anxiety levels come up or stay up for extended periods of time, usually I will see an increase in migraine or headache symptoms as well, so I’m trying to stay calm” | |
| Less opportunity to engage in preventive behaviors and therapies and challenges with telemedicine | “So I rely on massages a lot to help control the migraines, because a lot of the migraines come from the muscle knots in my neck. And during the beginning of the pandemic, physical therapy and massage therapy was out of the question. And I tried to see my neurologist via telemedicine, but the connection from his office wasn’t very strong. And it didn’t really work out, so I was forced to go back in … So yeah, it was really disruptive” | |
| Perceived stressors | Mask‐wearing mandates in public spaces, lockdowns, restrictions, and other public health policies related to the pandemic | “I think the frequency is greater since COVID and I think that’s attributed mainly to wearing the mask. Wearing the mask is very hard for me, because I s—I tend to struggle when I have my face covered anyway, my nose or mouth. I struggle anyway, but putting the mask on me has definitely been a factor. It’s increased my headaches. I go outside a lot less because of that reason” |
| Closures of school dorms | “I know that sometimes high stress situations—in the same way that high brain power can bother me, high stress can. So before everything shut down, there was a lot of debate—like I don’t know what’s happening, the news is saying terrible things every day… it was very concerning to me, because I was still in school at the time, that school wasn’t shutting down. What if school shut downs? What are they going to do? Are they going to kick me out of my dorm or where am I going to live? All of that was all happening at the same time. And at the same time, that was when I was supposed to be finally getting back to having headache management care, and that all went out the window a little bit” | |
| Competition for employment | “During this whole pandemic situation, I’ve had more headaches this year than I’ve experienced in a long time … I have it at work and then Coronavirus—then that made it even worse because in my state alone there were so many of us unemployed that it was ridiculous. And it’s more or less we fighting for employment. And when you be fighting for employment, it makes things more stressful and you’re holding your head. I know I’ve been holding mine. And I’m in and out the doctor’'s office, I’m in and out the emergency room. My life has been miserable. Just totally miserable” |
Generally it is the practice of the authors and the journal to use generic medication names rather than trade names; however, in this case participants quotes are presented verbatim including medication trade names as they are primary data.
Abbreviation: COVID‐19, coronavirus disease 2019.