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


Headache. 2022;62(3):284-293. 

In This Article

Abstract and Introduction


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.


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.