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The Multiple Sclerosis Performance Test MSPT: An iPad-Based Disability Assessment Tool
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Adapting to Multiple Sclerosis Stigma Across the Life Span.

Lauren A Spencer, Arielle M Silverman, Jonathan E Cook

    International Journal of MS Care
    |November 5, 2019
    PubMed
    Summary

    People with multiple sclerosis (MS) experience less stigma the longer they live with the condition. Adaptations over time help manage MS stigma and related isolation.

    Keywords:
    Chronic illnessDisease durationLife spanMultiple sclerosis (MS)Social stigma

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    Area of Science:

    • Neurology
    • Social Psychology
    • Public Health

    Background:

    • Multiple sclerosis (MS) is frequently associated with social stigma, impacting patient health.
    • Limited understanding exists regarding long-term adaptation to MS-specific social stigma.

    Purpose of the Study:

    • To investigate the relationship between the duration of multiple sclerosis and the experience of social stigma.
    • To explore how individuals adapt to stigma throughout their lives with MS.

    Main Methods:

    • Utilized data from 6771 participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) semiannual survey.
    • Assessed MS stigma, anticipation of stigma, and stigma-related isolation, controlling for demographic and health covariates.

    Main Results:

    • Longer duration of multiple sclerosis correlated with reduced self-reported stigma.
    • This inverse relationship held true for both experienced stigma and anticipated stigma, as well as feelings of isolation due to stigma.
    • Findings were adjusted for disability level, age, and other relevant variables.

    Conclusions:

    • Individuals with MS develop coping mechanisms over time, mitigating the impact of social stigma.
    • Healthcare providers should recognize that stigma may be a more significant concern for patients earlier in their MS journey.
    • Early interventions addressing stigma may be crucial for newly diagnosed individuals.