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Background

• Stigma is an undesired differentness associated with a particular characteristic or condition.
• Greater stigma has been associated with lower quality of life, increased depression, and poor health-related outcomes in neurologic populations^1,2.
• 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 including disease duration, disability, and disease category in PwMS.

Stigma in Persons with Multiple Sclerosis

Sasha I. Winston-Khan, BS,¹ Brian C. Healy, PhD,¹²³ Tanuja Chitnis, MD,¹² Howard L. Weiner, MD, ¹² Bonnie I. Glanz, PhD ¹²

(1) Brigham Multiple Sclerosis Center, Brigham and Women’s Hospital, Boston, MA, (2) Department of Neurology, Harvard Medical School, Boston, MA, (3) Biostatistics Center, Massachusetts General Hospital, Boston, MA

Table 2. Association between disease duration and stigma

Participants:

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• 348 PwMS enrolled in SysteMS (A SysteMS Biology Study of Clinical, Radiological, and Molecular Markers in Subjects with Multiple Sclerosis at the Brigham and Women’s Hospital) completed the computerized adapted testing version of NeuroQoL, a self-report measure of health-related quality of life to assess stigma.
• Subjects were ≥ 18 years of age with a diagnosis of clinically isolated syndrome or MS according to the revised McDonald Criteria.

1. Bandstra, N. F., Camfield, C. S., & Camfield, P. R. (2008). Stigma of epilepsy. Canadian Journal of Neurological Sciences, 35(4), 436-440.
2. Molina, Y., Choi, S. W., Cella, D., & Rao, D. (2013). The stigma scale for chronic illnesses 8-item version (SSCI-8): development, validation and use across neurological conditions. International journal of behavioral medicine, 20(3), 450-460.
3. Spencer, L. A., Silverman, A. M., & Cook, J. E. (2019). Adapting to Multiple Sclerosis Stigma Across the Life Span. International Journal of MS Care, 21(5), 227-234.

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Results-I

• The mean (SD) stigma score in our sample 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 also positively correlated (r_s=0.47).

Conclusion

• PwMS may experience stigma at lower levels than other neurologic populations.
• Stigma is higher in PwMS with a progressive disease course and higher disability, indicating that certain disease variables influence how PwMS experience stigma.
• After adjusting for disability and a progressive disease course, PwMS with longer disease duration appear to experience less stigma.
• This may result from greater time to come to terms with or adapt to an MS diagnosis and its associated social label³.

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Acknowledgements

Table 1. Demographic characteristics

Statistical methods:

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• Subjects were divided into two groups using disease category (relapsing vs. progressive) and Expanded Disability Status Scale (EDSS) (EDSS>=3 vs. EDSS<3).
• The difference in the mean stigma scores was compared using a two-sample t-test.
• Spearman’s correlation coefficient was used to estimate the association between EDSS and stigma score.

Results-II

• In the unadjusted analysis, increased disease duration was associated with increased stigma.
• After adjusting for EDSS and progressive disease course, increased disease duration was associated with decreased stigma.

Methodology

• Given the negative associations with stigma, stigma intervention strategies may be effective in increasing PwMS’s quality of life, especially for those most vulnerable to stigma, such as those with higher disability, a progressive form of disease, and shorter disease duration.