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Development of ETStig, a measure for stigma in essential tremor

      Highlights

      • People with tremor are subject to prejudicial assumptions and stigmatization.
      • ETStig is a new measure for quantifying stigma experience, psychological distress and behavior dysfunction in ET.
      • It was developed in conjunction with a panel of people with ET as well as clinical and research experts.
      • It is reliable, internally consistent, concurrent with an existing scale, and covaries with openness to psychological therapy.

      Abstract

      Introduction

      People with essential tremor commonly experience psychological difficulties that are not addressed. The effect of stigma, i.e., negative judgement by others because of a perceived difference in this case shaky movement, is a heretofore unstudied element. This project was undertaken to develop and field test a new measure for stigma associated with essential tremor.

      Methods

      Under guidance from a patient panel and an expert panel of neurologists and psychologists, the essential tremor stigma construct was delineated, and survey items were written to quantify three dimensions of interest: cumulative experience of stigma; related psychological distress; and resulting behavioral dysfunction. After pilot testing and revision, the essential tremor stigma measure underwent field testing by 198 essential tremor patients at two academic neurology clinics.

      Results

      The experience, distress and dysfunction scales were shown to have good internal consistency and test-retest reliability. Retained items demonstrated acceptable correlations and response properties. The validity of the distress scale was supported by concurrence with an existing stigma scale for neurologic disease, while a patient's openness to psychologic referral was predicted by higher scores on the dysfunction scale.

      Conclusion

      This new measure is introduced to study the phenomenon of stigma associated with essential tremor. It may prove useful in assessing potential treatments for the psychological distress and maladaptive behavior that result from this stigma.

      Keywords

      Abbreviations:

      ET (Essential Tremor), UTSW (University of Texas Southwestern Medical Center), UF (University of Florida)
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      References

        • Louis E.D.
        • McCreary M.
        How common is essential tremor? Update on the worldwide prevalence of essential tremor.
        Tremor Other Hyperkinet Mov (N Y). 2021; 11: 28
        • Elliott G.C.
        • et al.
        Understanding stigma - dimensions of deviance and coping.
        Deviant Behav. 1982; 3: 275-300
        • Louis E.D.
        • Rios E.
        Embarrassment in essential tremor: prevalence, clinical correlates and therapeutic implications.
        Park. Relat. Disord. 2009; 15: 535-538
        • Traub R.E.
        • et al.
        Development of an essential tremor embarrassment assessment.
        Park. Relat. Disord. 2010; 16: 661-665
        • Holding S.J.
        • Lew A.R.
        Relations between psychological avoidance, symptom severity and embarrassment in essential tremor.
        Chron. Illness. 2015; 11: 69-71
        • Louis E.D.
        • Rohl B.
        • Rice C.
        Defining the treatment gap: what essential tremor patients want that they are not getting.
        Tremor Other Hyperkinet Mov (N Y). 2015; 5: 331
        • Rao D.
        • et al.
        Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI).
        Qual. Life Res. 2009; 18: 585-595
        • Cella D.
        • et al.
        Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology.
        Neurology. 2012; 78: 1860-1867
        • de Vet H.T.
        • C B.
        • Mokkink L.B.
        • Knol D.L.
        Measurement in Medicine.
        Cambridge University Press, Cambridge2011
        • Harris P.A.
        • et al.
        Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.
        J. Biomed. Inf. 2009; 42: 377-381