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Sasha Winston-Khan

Pronouns

She/Her/Hers

Job Title

Research Assistant II

Academic Rank

Department

Neurology

Authors

Sasha Winston-Khan, Brian C. Healy, Tanuja Chitnis, Howard L. Weiner, Bonnie I. Glanz

Principal Investigator

Bonnie I. Glanz

Research Category: Neurosciences

Tags

Stigma in Persons with Multiple Sclerosis

Scientific Abstract

Background: Stigma is an undesired differentness associated with a particular characteristic or condition. Although well-studied in HIV and epilepsy, stigma in persons with multiple sclerosis (PwMS) is lesser known. We assessed the prevalence of stigma and its associations with disease characteristics in PwMS.

Methods: 348 PwMS completed NeuroQoL, a self-report measure of health-related quality of life that assesses stigma. Subjects were divided into two groups using disease category (relapsing vs. progressive) and disability status (EDSS>=3 vs. EDSS<3). The differences in mean stigma scores were compared using a two-sample t-test. Spearman’s correlation coefficient was used to estimate the association between EDSS and stigma score.

Results: The mean (SD) stigma score was 47.6 (7.7; n=348). Progressive subjects had higher mean stigma scores compared to relapsing subjects (mean difference=6.5; 95% CI: 4.4, 8.5; p<0.001). Subjects with high EDSS scores also had higher mean stigma scores compared to subjects with low EDSS scores (mean difference=7.4; 95% CI: 5.8, 9.0; p<0.001). Stigma scores and EDSS scores were positively correlated (rs=0.47).

Conclusion: PwMS may experience stigma at lower levels than other clinical populations. Stigma is higher in PwMS with a progressive disease course and higher disability, indicating that certain disease variables influence one’s experience with stigma.

Lay Abstract

Background: Stigma is an unwanted feeling of differentness associated with a particular characteristic or condition. Although it has been well-studied in HIV and epilepsy, less is known about stigma in persons with multiple sclerosis (PwMS). We assessed the proportion of PwMS with stigma and examined how stigma is associated with other features of the disease.

Methods: 348 PwMS completed NeuroQoL, a self-report measure of health-related quality of life to assess stigma. Subjects were divided into two groups using disease category (relapsing vs. progressive) and disability level (low vs. high). The differences in mean stigma scores were compared between groups. The association between disability level and stigma score was also examined.

Results: The mean stigma score was 47.6. Progressive subjects had higher mean stigma scores compared to relapsing subjects. Subjects with high disability scores also had higher mean stigma scores compared to subjects with low disability scores. There was a positive association between stigma scores and disability level.

Conclusion: PwMS may experience stigma at lower levels than other clinical populations. Stigma is higher in PwMS with a progressive disease course and higher disability, indicating that certain disease variables influence how PwMS experience stigma.

Clinical Implications

Reduced quality of life, negative health behaviors, and depression are associated with stigma in multiple sclerosis. Stigma is higher in patients with a progressive disease courses and increased disability. These patients may benefit from intervention strategies designed to reduce stigma.