Development, validity and reliability of the "Multiple sclerosis stigma scale"

Abstract

Background: Stigma in multiple sclerosis (MS) refers to the negative attitudes, beliefs, and behaviors that patients may encounter as a result of their diagnosis. Patients who hold stigmatizing beliefs are more prone to experiencing anxiety and depression, social isolation, and poor treatment adherence. To mitigate the adverse effects of stigma, it is crucial to assess stigmatizing beliefs; however, there is currently no specific stigma scale available for MS.

Objective: The aim of this study was to develop and validate "Multiple Sclerosis Stigma Scale (MSSS)".

Methods: This methodological study was conducted in three phases. In the first phase, the concept of stigma in MS was defined. In the second phase, an item pool was generated based on the findings from the first phase. In the third phase, psychometric properties of the scale were evaluated, including face and content validity, construct validity, convergent validity and reliability.

Results: After evaluating the validity (face, content, and construct validity) and reliability, the initial item pool of 276 items was reduced to 12 items. Factor analysis revealed two factors: discrimination and disclosure. The developed questionnaire had excellent reliability, with an internal consistency coefficient of 0.88 and a stability coefficient of 0.87.

Conclusion: The 12-item MSSS is valid and reliable for assessing the level of stigma in Turkish people with MS.

Keywords: Disclosure; Discrimination; Multiple sclerosis; Stigma scle; Stigmatization.