Development of ETStig, a measure for stigma in essential tremor.

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.