Impact of the COVID-19 Pandemic on People Living With Migraine

Results of the MICOAS Qualitative Study

Dawn C. Buse PhD; Maya T. Gerstein DrPH; Carrie R. Houts PhD; James S. McGinley PhD; Alyssa A. Uzumcu BA; Kelly P. McCarrier PhD; Alexis Cooke PhD; Nancy M. Touba MPH; Tracy K. Nishida PhD; R. J. Wirth PhD; Richard B. Lipton MD

Disclosures

Headache. 2022;62(3):284-293.

Abstract and Introduction

Abstract

Background: The coronavirus disease 2019 (COVID-19) pandemic is an ongoing global health crisis that has had a range of impacts on people living with migraine.

Methods: Qualitative interviews performed as part of the Migraine Clinical Outcome Assessment System project, a multi-stage Food and Drug Administration–grant funded program to develop a patient-centered core set of outcome measures for use in migraine clinical trials, offered an opportunity to explore the experience of living with migraine during the pandemic as well as to examine whether migraine treatment priorities, symptoms, and associated disability changed due to the pandemic. Semi-structured interviews were conducted in the United States between the summer and fall of 2020 with 40 individuals with self-reported, medically diagnosed migraine who self-reported that they had not tested positive for or been diagnosed with COVID-19.

Results: Seventy percent (n = 28) of the sample reported ≥1 pandemic-related impact on their life with migraine. Fourteen participants reported both positive and negative impacts, twelve reported negative impacts only, and two reported positive impacts only. Among those reporting ≥1 pandemic-related impact, nine participants (32%) reported more frequent and five (17%) reported less frequent migraine attacks. Other negative impacts included interrupted medical care (n = 9; 32%), and greater stress (n = 13; 46%). The most frequent positive impact reported was greater access to health care (n = 8; 29%). Ictal and interictal symptoms were not noted to change due to the pandemic, but some respondents reported less disability due to increased flexibility of schedules and reduced expectations. Treatment priorities did not change due to the pandemic.

Conclusion: The global COVID-19 pandemic has resulted in both negative and positive impacts for people living with migraine. Lessons to be considered when moving into a post-pandemic world include benefits of and satisfaction with telehealth and the benefits and importance of healthy lifestyle habits and flexibility such as improved sleep, reduced stress, and fewer social expectations.

Introduction

The coronavirus disease 2019 (COVID-19) global pandemic has had significant global impact, including on people living with migraine. Severe acute respiratory syndrome coronavirus 2 emerged in December 2019 and COVID-19 was declared a global pandemic in March 2020.^[1] The pandemic impacted people both directly (e.g., contracting the virus) and indirectly, particularly as mitigation and containment strategies resulted in dramatic changes in daily work and social habits, and alterations in health-care delivery.^[2–4] Migraine is ideally managed with a combination of tailored pharmacologic, non-pharmacologic, and lifestyle interventions.^[5,6] Access to most of these types of therapies has been impacted at various times during the pandemic. Data collected via clinician interviews, chart reviews, and web-based surveys of people living with migraine during the pandemic have documented cancellation of face-to-face medical visits and in-clinic procedures, heightened levels of psychosocial stress, social isolation, disruption of sleep and dietary habits, and financial concerns, as well as other issues thought to contribute to increased attack frequency.^[4–10] Some studies have also reported perceived benefits to people with migraine including reduced frequency of migraine attacks, improved health-care access primarily via telehealth, the ability to work and attend school from home, increased and improved sleep, and reduced social pressures and expectations for some individuals.^[11,12]

To our knowledge, none of the published studies used patient-centered qualitative approaches to characterize the impact of the COVID-19 pandemic on migraine. Our study addresses this gap by capturing the impact of the pandemic on people living with migraine disease through in-depth, individual, semi-structured interviews and qualitative analysis techniques. Qualitative interviews, like those conducted in this study, offer a dynamic approach to data collection, generating valuable conversation and depth of understanding that is difficult to gain from a survey or chart review.

The Migraine Clinical Outcome Assessment System (MiCOAS) project, a multi-stage Food and Drug Administration (FDA)–funded program, is focused on developing a patient-centered core set of outcome measures/endpoints to be used in the development of migraine therapeutics. An early action of the MiCOAS project was to gather input from people living with migraine via qualitative interviews. This research was initiated in the summer of 2020, coinciding with high rates of the virus in the United States and widespread precautionary measures. Therefore, a discussion of the impacts of the COVID-19 pandemic on participants was included as well as assessing whether priorities for attributes of treatments would be affected. The objective of this report is to disseminate key findings regarding the qualitative effects of COVID-19 on people living with migraine who have not contracted COVID-19.

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Abstract and Introduction
Methods
Results
Discussion
Conclusion
References

Table 1. Interview participant characteristics
Variable	Category	Total interview sample (N = 40)
Age, n (%)	18–24 years old	5 (12)
	25–44 years old	17 (43)
	45–64 years old	13 (33)
	65 years and older	5 (13)
Gender, n (%)	Women	31 (78)
	Men	7 (18)
	Genderqueer/gender non-binary, transgender person	2 (5)
Race^a, n (%)	White	27 (68)
	Black or African American	9 (23)
	American Indian or Alaskan Native	4 (10)
	Asian	3 (8)
	Native Hawaiian or Other Pacific Islander	1 (3)
	Other^b	1 (3)
	Prefer not to answer	1 (3)
Ethnicity, n (%)	Hispanic	9 (23)
	Non-Hispanic	31 (78)
Relationship status, n (%)	Married or partnered	19 (48)
	Not married or partnered	21 (53)
# of other adults in household, n (%)	None	8 (20)
	1–2	27 (68)
	3–4	5 (13)
# of children in household, n (%)	None	12 (65)
	1	5 (13)
	2 or more	9 (23)
Education, n (%)	Grade 12 or GED equivalent	3 (8)
	Associates degree, technical school, or trade apprenticeship; some college (no degree awarded)	18 (45)
	College degree or advance degree	19 (48)
Employment^a, n (%)	Paid employment	22 (55)
	Student	8 (20)
	Homemaker	3 (8)
	Retired	6 (15)
	Unemployed	2 (5)
	Disabled (disability or leave of absence for any reason)	10 (25)
	Other	1 (3)
Household income, n (%)	Under $22,000	8 (20)
	$22,000 to $49,999	10 (25)
	$50,000 to $99,999	10 (25)
	$100,000 and over	8 (20)
	Prefer not to answer	4 (10)
Migraine subtype by frequency, n (%)	<15 headache days per month on average (episodic migraine^c)	20 (50)
	≥15 headache days per month on average (chronic migraine^c)	20 (50)
Average number of headache days per month, n (%)	0–1	0
	2–3	6 (15)
	4–7	8 (20)
	8–14	6 (15)
	15–23	18 (45)
	24 or more	2 (5)
OTC or prescription acute pharmacologic treatment (within past year), n (%)	Yes	40 (100)
Current preventive pharmacologic treatment, n (%)	Yes	35 (88)
	No	5 (13)

Abbreviations: ICHD-3 CM, International Classification of Headache Disorders 3rd edition, chronic migraine; OTC, over the counter.
^aTotal percent exceeds 100 because participants were able to select more than one race and/or employment status category.
^bRespondent reported races of "White, South American, and North African" and chose the label "other."
^cChronic migraine was defined as an average monthly headache day frequency of ≥15 per month among people who meet criteria for migraine as per Silberstein-Lipton criteria and episodic migraine was the corollary.²⁵ It was not possible to assess the ICHD-3 CM criterion of ≥8 migraine days per month in this single visit study, which did not include a diary. Percentages ending in ≥0.5 were rounded up to the next whole number.

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"

Note: 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.

Table 3. Content areas and examples of the positive impacts of the COVID-19 pandemic provided by participants
Content area	Examples generated by participants	Sample quote
Positive general life impacts	Fewer concerns about the need to engage in activities outside the home (e.g., remote work and school, errands, appointments)	"Just that the world kind of has to live the way I have now. Has to stay inside, and things are more accessible to me"
	Reduced guilt over cancelling social events with friends or family	"Because I can't really do much, because I can't go out with friends or go do anything at a theater or like a festival or a concert or something. I guess I am able to just stay home in between and not have to worry about breaking plans as much. But in a way, it's kind of a relief, I suppose"
	Greater access to online services (e.g., delivery services, telehealth)	"There's a lot more online that I couldn't access and I'm afraid will be gone again. But actually, the world's like a better place for me…"
	The ability to work from home and feeling more in control	"You know what, I feel really bad saying this, but in any way, I think the silver lining of pandemic is getting to do everything from home. So I can, to the best of my abilities, control my own environment. So in an office or in a classroom, I can't do my work sprawled on the bed in the dark with an ice hat, but I can do that. So now—so it—again, it sounds so terrible to take something good out of this, but that part has been a little bit easier"
Benefits of telehealth	Improved access to care	"Before coronavirus, I had to go to an emergency room every time that I needed care_that I needed medications to break it. So now that I have it at home, I don't have to do that and I don't have to coordinate with somebody else to drive me and hang out with me for a couple hours and then drive me later. Now I can just be at home, and I don't have to do anything. And I know I'm going to feel better in 15 minutes. And I can just go back to living my life."
	Reduced need for travel to work, medical appointments, etc	"Now, benefits of COVID is (a) I don't have to get in my car in the sun and drive to my doctor"
	Reduced exposure to potential migraine triggers	"I'm like now, I won't have people up on my back with their nasty-smelling perfume. And you know, I—they limit the number of people in the stores. See, this was all perfect for people with migraines, because we_these are things—we're like, I wish people would just stay off my back. I can't—back up, you know? So this helps us greatly. And then they're only allowing a certain amount of people in an area, and this is perfect for people like us"
	Coordination of at-home treatments leading to quicker pain and symptom relief	"So now—so coronavirus actually helped me be able to get the treatment to be—to do it at home, because my doctors didn't want me to be going to emergency rooms"
	Better communication, accessibility, and less travel to health-care professionals	"Again, an improvement. I had asked my doctor to—for phone calls, and now I'm able to not have to travel to see my doctors, which is amazing. And if I need to, I can. But yeah, it's been actually really for the better"

Abbreviation: COVID-19, coronavirus disease 2019.

Authors and Disclosures

Dawn C. Buse PhD^1,2, Maya T. Gerstein DrPH³, Carrie R. Houts PhD¹, James S. McGinley PhD¹, Alyssa A. Uzumcu BA³, Kelly P. McCarrier PhD³, Alexis Cooke PhD³, Nancy M. Touba MPH³, Tracy K. Nishida PhD¹, R. J. Wirth PhD¹ and Richard B. Lipton MD^2,4

¹Vector Psychometric Group, LLC, Chapel Hill, North Carolina, USA
²Neurology, Albert Einstein College of Medicine, Bronx, New York, USA
³Patient Centered Outcomes, Open Health Group, Bethesda, Maryland, USA
⁴Headache, Montefiore Medical Center, Bronx, New York, USA

Correspondence
Dawn C. Buse, Vector Psychometric Group, LLC, Dept # 880502, PO Box 29650, Phoenix, AZ 85038–9650, USA. Email: dawn.buse@vpgcentral.com

Conflict of Interest
Dawn C. Buse is a part-time employee of Vector Psychometric Group LLC, which in turn received funds from the FDA to conduct the research detailed in the manuscript. In addition, she receives research funding from the National Headache Foundation and Amgen. She has been a consultant to Allergan/Abbvie, Amgen, Lilly, Lundbeck, and Teva Pharmaceuticals. Maya T. Gerstein was a full-time employee of Pharmerit/OPEN Health, which in turn received funds from Vector Psychometric Group LLC and the FDA to conduct the research detailed in the manuscript. Carrie R. Houts is a full-time employee of Vector Psychometric Group LLC, which in turn received funds from the FDA to conduct the research detailed in the manuscript. James S. McGinley is a full-time employee of Vector Psychometric Group LLC, which in turn received funds from the FDA to conduct the research detailed in the manuscript. JSM has received honoraria/payment/reimbursement from the journal Cephalalgia (biostatistics editor). JSM has also received research grants/support from Amgen, Inc. and the National Headache Foundation. Alyssa A. Uzumcu was a full-time employee of Pharmerit/OPEN Health, which in turn received funds from Vector Psychometric Group LLC and the FDA to conduct the research detailed in the manuscript. Kelly P. McCarrier is a full-time employee of Pharmerit/OPEN Health, which in turn received funds from Vector Psychometric Group LLC and the FDA to conduct the research detailed in the manuscript. Alexis Cooke was a full-time employee of Pharmerit/OPEN Health, which in turn received funds from Vector Psychometric Group LLC and the FDA to conduct the research detailed in the manuscript. Nancy M. Touba is a full-time employee of Pharmerit/OPEN Health, which in turn received funds from Vector Psychometric Group LLC and the FDA to conduct the research detailed in the manuscript. Tracy K. Nishida is a full-time employee of Vector Psychometric Group LLC, which in turn received funds from the FDA to conduct the research detailed in the manuscript. R. J. Wirth is a full-time employee of Vector Psychometric Group LLC, which in turn received funds from the FDA to conduct the research detailed in the manuscript. Richard B. Lipton received research support from the FDA on the MiCOAS project. In addition, he receives research funding from the NIH, the National Headache Foundation, and the Marx Foundation. He also receives research support from Allergan/Abbvie, Amgen, Biohaven, Eli Lilly, and Electrocore. He receives personal fees as a consultant or advisor from Allergan/Abbvie, Amgen, Biohaven Holdings, Dr. Reddy's, GlaxoSmithKline, Grifols, Eli Lilly, Lundbeck, Merck, Novartis, and Teva Pharmaceuticals. He holds stock or options in Biohaven Holdings and CtrlM Health. In addition, he receives royalties for Wolff's Headache, 7th and 8th editions.

Author Contributions
Study concept and design: Dawn C. Buse, Maya T. Gerstein, Carrie R. Houts, James S. McGinley, Alyssa A. Uzumcu, Kelly P. McCarrier, Alexis Cooke, Nancy M. Touba, Tracy K. Nishida, R. J. Wirth, Richard B. Lipton. Acquisition of data: Maya T. Gerstein, Alyssa A. Uzumcu, Kelly P. McCarrier, Alexis Cooke, Nancy M. Touba. Analysis and interpretation of data: Maya T. Gerstein, Alyssa A. Uzumcu, Kelly P. McCarrier, Alexis Cooke, Nancy M. Touba. Drafting of the manuscript: Dawn C. Buse, Maya T. Gerstein, Carrie R. Houts, James S. McGinley, Tracy K. Nishida, R. J. Wirth, Richard B. Lipton. Revising it for intellectual content: Dawn C. Buse, Maya T. Gerstein, Carrie R. Houts, James S. McGinley, Alyssa A. Uzumcu, Kelly P. McCarrier, Alexis Cooke, Nancy M. Touba, Tracy K. Nishida, R. J. Wirth, Richard B. Lipton. Final approval of the completed manuscript: Dawn C. Buse, Maya T. Gerstein, Carrie R. Houts, James S. McGinley, Alyssa A. Uzumcu, Kelly P. McCarrier, Alexis Cooke, Nancy M. Touba, Tracy K. Nishida, R. J. Wirth, Richard B. Lipton.

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Impact of the COVID-19 Pandemic on People Living With Migraine

Results of the MICOAS Qualitative Study

Abstract and Introduction

Abstract

Introduction

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References

Authors and Disclosures

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