Objective: To develop a self assessment scale for quantitative measurement of embarrassment in patients having dystonia.

Background: Patients suffering from movement abnormalities like dystonia frequently report of embarrassment, yet there is no formal tool to assess embarrassment in such individuals. Our aim was to develop a tool for quantitative measurement of embarrassment and assess its clinimetric properties. Such an instrument could be used to assess response to treatment in clinical practice and clinical trials and bring into forefront the impact of embarrassment into the existing clinical disabling condition.

Methods: Based on literature reviews, expert opinions and surveys of patients with dystonia, we constructed the Disordered Movement Embarrassment Assessment (DMEA) scale. This questionnaire is intended to be a brief, easy-to-administer, 20-item self-assessment scale. The DMEA was assessed for validity, reliability and other clinimetric properties in 54 dystonia patients.

Results: Survey of dystonia experts (n=12) resulted in an overall estimation of about 82% patients experiencing embarrassment due to dystonia. DMEA total scores correlated with Hospital Anxiety and Depression Scale scores (p <0.001 and p <0.001) and dystonia movement and disability scale scores (p =0.003 and p =0.004). Test-retest reliability was high (p <0.001). Factor analysis identified 2 factors, explaining 67.3% of the variance (self evaluation and avoidance repertoire). For the 2 factors, high internal consistency was found (Cronbach’s alpha = 0.78 and 0.80).

Conclusions: Embarrassment is commonly experienced by patients with dystonia. The DMEA is a reliable and valid tool to measure embarrassment in patients with such disorders.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/development-of-a-tool-for-assessment-of-embarrassment-due-to-dystonia/