Perceived negative effects on health care included disruption of interventional treatments that required in-person contact, concerns about losing healthcare providers, reluctance to use urgent care, and difficulty in obtaining certain medications due to shortages.
In a newly published analysis, 40 individuals with self-reported medically diagnosed migraine who underwent qualitative interviews between the summer and fall of 2020 expressed both negative and positive effects of the COVID-19 pandemic, some of which did and did not align with previously collected data.
Of the key findings, 70% (n = 28) of the sample reported at least 1 pandemic-related impact on their experience with migraine, compared to 30% (n = 12) who did not. Fourteen participants reported both positive and negative impacts, 12 participants reported negative impacts only, and 2 participants reported positive impacts only.
Led by Richard Lipton, MD, director, Montefiore Headache Center, semistructured interviews were conducted on individuals aged 18-75 years with migraine who had not tested positive or been diagnosed with COVID-19. Interviews were conducted virtually, lasted approximately 90 minutes, and included sections about migraine history, symptomatology, and treatment priorities as well as a section on the potential impacts of the pandemic on several outcomes. Respondents were not allowed to skip any screener or sociodemographic questions but could select “prefer not to answer” as a response option for several questionnaire items.
As part of patient-focused drug development efforts, the FDA’s Center for Drug Evaluation and Research initiated a pilot grant program to support the development of publicly available core sets of Clinical Outcome Assessments (COAs) and their related end points for specific diseases using patient input. In September 2019, the FDA awarded grants to 3 projects, including the Migraine Clinical Outcome Assessment System (MiCOAS), which was reported in this analysis.
The sample population was 78% female, 68% White, and 53% did not have a college degree. Half of the participants (n = 20) had at least 15 headache days per month on average while the other half had less than 15. All participants currently used acute treatments and 88% currently used preventive therapy for migraine.
Barriers to treatment, including disruption to in-person services, difficulty in obtaining a new healthcare provider, delayed and/or backordered prescriptions, and desire to avoid using urgent care centers were all cited as negative impacts. Increased stress (46%; n = 13), increased risk of migraine attacks (39%; n = 11), disrupted access to health care (32%; n = 9), and increased attack severity (32%; n = 9) represented the 4 most frequently reported negative impacts.
Perceived reasons for increased migraine attack frequency and severity—one of the main negative impacts highlighted—had examples of disrupted access to preventive treatments, increased stress and anxiety, and less opportunity to engage in preventive behaviors and therapies. Perceived stressors, included examples of competition for employment, closures of school dorms, as well as mask-wearing mandates in public spaces, lockdowns, restrictions, and other public health policies related to the pandemic.
Among the 28 individuals who reported pandemic-related migraine impacts, 57% (n = 16) reported at least 1 positive change in their experience with migraine. The 2 most often reported positive impacts included easier access to health care (29%; n = 8) and decreased frequency of migraine attacks (17%; n = 5). Additional COVID-19 pandemic-influenced benefits to individuals with migraine included the ability to work and/or attend school from home as well as having fewer social engagements and reduced expectations. These patients also benefitted from a reduction in missed activities and reduced guilt, along with greater perceived ability to control their environments, manage their trigger factors, and maintain health lifestyles.
"No participants reported that the current pandemic changed their perspective on their priorities for acute or preventive treatments. To our knowledge, this is the first time these concepts have been assessed and reported," Lipton et al wrote. "Respondents also did not report changes in ictal or interictal migraine attack symptoms, but they shared narratives suggesting a reduction in disability of attacks, often related to greater control over one’s schedule, fewer expectations, and the ability to work and/or attend school from home."