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 2018 to 2020. 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