Migraine-Related Stigma Common, Leads to Greater Disability, Intellectual Burden, Reduced 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 patients 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 patients 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, patients 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.

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In the sample, 31.7% (18,708 of 59,001) of patients reported experiencing MiRS-Secondary Gain and/or MiRS-Minimizing Burden often/very often. Experiences 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 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 patients 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).

REFERENCE
1. 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.0000000000000208074