New Insight Into Migraine Stigma

The first migraine-specific tool to measure perceived external stigma reveals that patients worry most about misconceptions of secondary gains and minimization of their disease burden, new research showed.

The migraine-related stigma (MiRS) questionnaire may help clinicians and researchers quantify and better understand these concerns, the investigators noted.

“The aim of this analysis was to understand in more detail and develop a scale that would measure the negative attitudes that people with migraine felt to be directed towards them by people in their environment,” study investigators, led by Elizabeth K. Seng, PhD, of the Department of Neurology, Albert Einstein College of Medicine, Bronx, New York, wrote. 

The study was published online on January 22 in Headache.

To date, patient-reported migraine measures have focused primarily on biological and psychological factors, the authors noted. To better gauge migraine’s biopsychosocial impact, these investigators crafted the first validated gauge for analyzing social determinants of health in individuals with migraine.

The researchers met with small patient focus groups before consulting an expert panel of neurologists and psychologists to refine the questionnaire.

After minor revisions, investigators incorporated the 12-item MiRS questionnaire into the OVERCOME survey, which was conducted online from 2src18 to 2src2src. Using a five-point ascending scale, 61,932 respondents answered questions about how often they felt others perceived their migraines or severe headache attacks as attention-seeking or easily treatable.

Analysis of responses revealed two key MiRS factors — secondary gain (eigenvalue, 21.5, accounting for 88.9% of total variance) and minimizing burden (eigenvalue, 2.7; accounting for 11.1%).

The secondary gain factor includes eight questions measuring how often respondents feel others view their migraines as an excuse to avoid work, school, or responsibilities. The minimizing burden factor consists of four questions assessing how often patients believe others underestimate their pain and overall disease impact.

The MiRS–Secondary Gain and MiRS–Minimizing Burden subscales demonstrated strong internal consistency and correlated as expected with measures of migraine-related burden, disability, and quality of life. For instance, patients with higher interictal burden reported experiencing secondary gain–related stigma more frequently than those with lower interictal burden.

Commenting on the research for Medscape Medical News, Steven M. Baskin, PhD, director of Behavioral Medicine Service at the New England Institute for Neurology and Headache in Stamford, Connecticut, said people without migraine generally underestimate patients’ interictal burden.

“It’s not just a headache. There’s a significant burden between attacks. I see many patients who worry in advance about work travel or functioning at an important meeting after a migraine because of lingering cognitive effects.” Baskin was not involved in the research. 

Overall, Baskin added, the scale validates the amount and nature of stigma felt by people with migraine. Migraine is the leading cause of disability in adults younger than 5src years, he said, and has carried stigma even within neurology, albeit significantly less in recent years.

However, Baskin noted that an abundance of questionnaires already exists to assess various aspects of migraine, including psychiatric comorbidities, making it unlikely that neurologists will use the full MiRS in clinical practice.

However, he suggested that asking patients a few key MiRS questions — such as how often they feel others perceive their migraines as attention-seeking or an excuse to avoid responsibilities — can effectively serve the questionnaire’s purpose.

Much of the social stigma surrounding migraine stems from its highly variable impact. 

“Patients can have one attack a year or daily severe headache,” said Baskin. “ Previous research has shown that one third of the public believe that individuals with migraine use their illness to get out of work.”

In this study, nearly half of respondents believed that migraine is easily treatable, and 36% believed that unhealthy habits cause migraine.

“And many people in the workforce don’t disclose that they’re missing work because of migraine,” he added. “They might say they have the flu or something else.”

Therefore, Baskin said it’s important for neurologists to ask MiRS-based questions and help patients develop plans for managing work productivity and communicating with their employers.

In these areas, he said, neurologists can serve as patient advocates — both individually and through broader educational initiatives. Such efforts can help patients explain migraine to their employers, negotiate flexible work schedules, plan travel thoughtfully, designate a space to rest at work, and take short relaxation breaks with fresh air. Most importantly, Baskin emphasized the need for an emergency kit stocked with medication for early treatment.

“And sometimes,” he said, “people must go home, treat, rest, and then work virtually. So, it’s very helpful to communicate with supervisors and explain the situation and how one can work productively in that environment.”

Having honest conversations and knowing how to word work-related requests usually works to patients’ advantage, he added.

The study was supported by Eli Lilly and Company. Baskin has been a consultant to Teva and Theranica.

John Jesitus is a Denve