Migraine-Related Stigma Common, Impacts Disability, Interictal Burden, and QoL

Nearly one-third of people with migraine in the United States reported experiencing migraine-related stigma often or very often. Further, those who reported 15 or more headache days experienced migraine-related stigma at a rate nearly double that of those reporting 4 or fewer headache days, according to the results of a study published in Neurology.

The ObserVational survey of the Epidemiology, tReatment and Care Of MigrainE (OVERCOME) study is a prospective, multicohort, longitudinal, web-based survey conducted yearly between 2018 and 2020. Adults living in the US who reported active headache in the past 12 months and met the criteria for migraine were recruited for this study. Eligible participants (N=59,001; mean age, 41.3; 74.9% women; 70.1% White) responded to the Migraine-Related Stigma (MiRS), Migraine Disability Assessment (MIDAS), Migraine Interictal Burden Sclae-4 (MIBS), and Migraine-Specific Quality of Life Questionnaire v2.1 Role-Function Restrictive (MSQ-RFR) questionnaires.

Of the study participants, 34.8% were considered to be normal weight or underweight and the average number of comorbidities was 3.8. Most participants reported experiencing 0 to 3 monthly headache days (58.9%), while 19.6% of participants reported 4 to 7 headache days, 10.6% reported 8 to 14 headache days, and 10.8% reported experiencing 15 or more headache days per month.

In response to the MIDAS questionnaire, participants reported little or no (38.8%), mild (16.7%), moderate (17.8%), or severe (26.6%) disability.

In response to the MIBS questionnaire, participants reported no (29.6%), mild (16.6%), moderate (14.6%), and severe (39.2%) interictal burden.

According to the MiRS questionnaire:

• 11.4% of participants never experienced migraine-related stigma,
• 56.9% rarely or sometimes experienced stigma,
• 16.9% often or very often experienced stigma and felt others minimized their symptom burden (MB),
• 2.6% often or very often experienced stigma and felt others perceived they were trying to benefit from their condition (SG), and
• 12.1% often or very often experienced stigma and fit both MB and SG categories (both).

After controlling for sociodemographics, clinical characteristics, and monthly headache days, stigma was related to disability, interictal burden, and migraine-specific quality of life.

MIDAS scores were higher among the MiRS often-both (rate ratio [RR], 2.68; 95% CI, 2.56-2.80), often-SG (RR, 2.38; 95% CI, 2.22-2.55), often-MB (RR, 2.18; 95% CI, 2.10-2.27), and rarely (RR, 1.62; 95% CI, 1.57-1.68) groups compared with the never group.

Similarly, MIBS scores were higher among the MiRS often-both (RR, 3.55; 95% CI, 3.41-3.70), often-SG (RR, 3.78; 95% CI, 3.55-4.02), often-MB (RR, 2.40; 95% CI, 2.31-2.49), and rarely (RR, 1.98; 95% CI, 1.91-2.04) groups compared with the never group.

Quality of life (QoL) scores also depended on MiRS category, in which MSQ-RFR scores decreased with more stigma. Compared with the MiRS never group, the MiRS often-both (RR, 0.63; 95% CI, 0.61-0.64), often-SG (RR, 0.74; 95% CI, 0.71-0.76), often-MB (RR, 0.77; 95% CI, 0.75-0.78), and rarely (RR, 0.90; 95% CI, 0.89-0.91) cohorts experienced worse quality of life.

Study limitations included the MiRS instrument’s inability to compare migraine-related stigma with other disease states, as well as its inability to capture all the different facets of stigma (eg, alienation, social withdrawal).

The study authors conclude that “clarifying the mechanisms that link stigma to health outcomes could set the stage for interventions that may reduce the burdens of migraine across the full spectrum of headache frequency.”

Disclosures: This research was supported by Eli Lilly & Company. Some study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of disclosures.