Migraine-related Stigma is Common and Impacts Level of Disability, Quality of Life

Published data from the OVERCOME study, an observational population-based examination of nearly 60 000 adults with migraine, showed that almost one-third of participants experienced migraine-related stigma often/very often.

After controlling for sociodemographic, clinical characteristics, and monthly headache days, the study also found that experiencing migraine-related stigma often was associated with increased disability and interictal burden and reduced quality of life.

The study, comprised of 59 001 adults with migraine, used the 12-item Migraine-Related Stigma (MiRS) questionnaire to assess the frequency of migraine-related stigma. It contained 2 factors: feeling that others viewed migraine as being used for Secondary Gain (8 items; α = 0.92) and feeling that others were Minimizing disease Burden (4 items, α = 0.86). Because both MiRS-Secondary Gain scores (range 0–32) and MiRS-Minimizing Burden (range 0–16) had 0-inflated distributions, scores were categorized by how often the respondent experienced each aspect of migraine-related stigma.

Led by Robert Shapiro, MD, PhD, professor of neurology, University of Vermont Larner College of Medicine, participants were categorized as either (1) MiRS-Both (Secondary Gain and Minimizing Burden often/very often; (2) MiRS-SG (Secondary Gain often/very often); (3) MiRS-MB (Minimizing Burden often/very often); (4) MiRS-Rarely/Sometimes; (5) MiRS-Never. The current analyses focused on pooled data from baseline surveys conducted in 2018, 2019, and 2020.

In the sample, 31.7% of study participants reported experiencing MiRS-Secondary Gain and/or MiRS-Minimizing Burden often/very often. Experience of at least 1 form of migraine-related stigma was found in 25.4% of those with 0-3 monthly headache days and 47.5% of those with at least 15 monthly headache days.

Experience of at least 1 form of migraine-related stigma was found in 25.4% of those with 0-3 monthly headache days and 47.5% of those with at least 15 monthly headache days.

Between the groups, those who reported MiRS-MB, MiRS-SG, or MiRS-Both often/very often had more severe migraine-related disability (44.2% vs 9.9%; standardized mean difference [SMD], 0.84), as demonstrated by results of the Migraine Disability Assessment (MIDAS), and higher interictal burden (62.0% vs 11.2%; SMD, 1.24), as explained on Migraine Interictal Burden Scale (MIBS).

In addition, these groups reported lower quality of life (MSQ-RFR, 41.2 vs 68.7; SMD, 1.2) more comorbidities (4.6 vs 3.0; SMD, 0.52), and higher Patient Health Questionnaire (PHQ)-4 scores (6.1 vs 2.6; SMD, 1.0).

When examining the relationship of MIDAS scores to MiRS, 74.9% of the MiRS-Both group had moderate or severe disability compared with just 18.6% of the MiRS-Never group. At each monthly headache day, the highest estimated MIDAS score was within the MiRS-Both group and lowest was within the MiRS-Never group.

Between the groups, a higher percentage of participants experiencing MiRS often/very often experienced interictal burden. More specifically, 79.4% of those in the MiRS-Both group had severe interictal burden vs 11.2% of those in the MiRS-Never group. Even after accounting for sociodemographics, clinical characteristics, and monthly headache day frequency associated with MIBS-4 total score, the risk of increased burden of migraine between attacks was significant for each MiRS group compared with the MiRS-Never group, and the risk more than tripled for the MiRS-Both group (RR, 3.55; 95% CI, 3.41-3.70).

Disease related stigma is common among other conditions referred to as concealable or invisible, Shapiro and colleagues wrote. "Those who experience migraine interictal burden may be especially prone to experiencing stigma because people typically seem completely well between attacks and are expected to function normally."

The researchers observed increased disability and decreased quality of life across all frequencies of monthly headache days, leading them to suggest the importance of research to clarify "the mechanisms that link stigma to health outcomes," which "could set the stage for interventions that may reduce the burdens of migraine across the full spectrum of headache frequency."

Source: Shapiro RE, Nicholson RA, Seng EK, et al. Migraine-related stigma and its relationship to disability, interictal burden, and quality of life: results of the OVERCOME (US) study. Neurology. 2024;102(3). doi:10.1212/WNL.0000000000208074