A Multi-country Comparison of Migraine-related Stigma in People Living with Migraine: Results from the CaMEO-International Study
Robert Shapiro1, Dawn Buse2, Elizabeth Seng2, Richard Lipton2, Kristina Fanning3, Brett Dabruzzo4, Michael Seminerio5, William Young6
1Larner College of Medicine, University of Vermont, 2Albert Einstein College of Medicine, 3MIST Research, 4AbbVie Medical Affairs, 5AbbVie, 6Thomas Jefferson University
Objective:
Measure migraine-related stigma among people living with migraine across multiple countries.
Background:
Chronic Migraine Epidemiology and Outcomes – International (CaMEO-I) Study was a cross-sectional, web-based survey conducted in 2021-2022 in Canada, France, Germany, Japan, the UK, and US.
Design/Methods:
Respondents meeting modified International Classification of Headache Disorders migraine criteria were identified via Stigma Questionnaire for Migraine (SQM): 9 items on migraine-related stigma were assessed with responses ranging from “never” (1) to “very often” (5). Items were summed and rescaled to range: 0-100. Quartile scores: 1st-quartile:≤8.33, 2nd-quartile:8.34-25.00, 3rd-quartile:25.01-47.22, 4th-quartile:>47.22.
Results:
In 14,492 respondents with migraine (5.4%-9.5% respondents across 6 countries had ≥15 monthly headache days), median (interquartile range) SQM-scores in 1st, 2nd, 3rd, and 4th SQM-quartiles were 2.8(5.6), 16.7(8.3), 36.1(11.1), and 61.1(18.7). Median stigma scores were highest among respondents with 15 or more monthly headache days. Proportion of people with migraine reporting stigma “more than sometimes” varied by SQM-items and countries. 31.5% felt others viewed their migraine/severe headache attacks with lack of understanding often/very often, 17.5% reported feeling others viewed their migraine/severe headache attacks as their own fault often/very often, and 15.9% reported feeling others viewed their migraine/severe headache attacks as a way to get out of work/activities/commitments often/very often. 15.5%, 13.1%, and 11.8% of respondents reported feeling criticized/thought less of by family/co-workers/supervisor often/very often because of their migraine/severe headaches. 16.5% of respondents reported thinking less of themselves/felt ashamed/guilty because of their migraine/severe headaches often/very often. Proportion of people with stigma was lowest in France and highest in the UK based on percentages of respondents in highest (4th) quartile of SQM-responses (11.7% and 28.2%). Difference among countries in overall distribution of SQM-scores was significant (chi-squared=750.023, P<0.001). People in the US felt greater migraine-related stigma than France and Japan (chi-squared=287.5 and 167.5, P<0.001).
Conclusions:
Further research is needed to explore country-specific differences contributing to migraine-related stigma.