Stigma and Social Avoidance in Adults with Essential Tremor.

Background: People with essential tremor (ET) can be subject to stigma, and some adopt avoidance behaviors. Characteristics associated with ET stigma and the relationship between perceived stigma and social dysfunction have not been studied. Objectives: To discern predictors of perceived stigma and social dysfunction in ET, and to identify potentially treatable psychological factors associated with social dysfunction. Methods: We surveyed ET patients (n = 158) on recalled stigma incidents and social dysfunction related to tremor, as well as clinical and demographic characteristics including tremor severity, and psychological constructs including anxiety, depression, mindfulness, resilience, and narcissism. Results: Worse tremor severity (Standardized beta [SB] 1.4, P < 0.001) especially among younger participants (interaction of age and tremor severity SB -0.9, P < 0.001) and presence of vocal tremor (SB 0.7, P = 0.002) predict perceived stigma. 53/157 (33.8%) participants met criteria for social dysfunction, employing maladaptive avoidance strategies. Scores for perceived stigma (Odds Ratio [OR] 1.2, P = 0.002), depression (OR 1.5, P = 0.004) and stigma psychological distress (OR 1.2, P = 0.001) as well as sex (OR 4.3 for females, P = 0.045) predicted social dysfunction. Conclusions: Depression and stigma psychological distress contribute to social dysfunction related to ET stigma. Treating these psychological factors may mitigate social avoidance behaviors prevalent among susceptible individuals: those who most perceive ET stigma, i.e. relatively younger patients with worse tremor or with vocal tremor, and in particular females who are more prone to social dysfunction than males with the same degree of perceived stigma.

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

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.

Functional analysis and intervention for perseverative verbal behaviour of an older adult with traumatic brain injury.

OBJECTIVE: A functional analysis of behaviour was conducted to determine the controlling variables related to the perseverative verbal behaviour (PBV) of a 60-year-old female with a long-standing traumatic brain injury receiving educational assistance. METHOD: Functional analyses (FA) of antecedent and consequent conditions related to PCB were conducted to determine controlling influence of: (a) content of verbal interaction and, (b) social reinforcement. After isolating the controlling variables, the functioned-based intervention was implemented in 60 minute tutoring sessions. A reversal condition was used to demonstrate experimental control of the behavior during tutoring sessions. RESULTS: PVB which occurred in the context of tutoring for an undergraduate course significantly interfered with the delivery of instruction. Multiple replications of the functional relation between social reinforcement and PVB duration was demonstrated using an A-B-A-B reversal design during functional analysis and tutoring conditions. PVB markedly declined, but did not extinguish over the course of weekly tutoring (extinction) sessions, most likely due to 'bootleg reinforcement' occurring in other situations. CONCLUSIONS: Results indicate that perseverative verbal behaviour following closed head injury may be strongly influenced by the social contingencies operating in various contexts and is amenable to applied behaviour analysis interventions.

Social anxiety, tremor severity, and tremor disability: a search for clinically relevant measures.

Background. While social anxiety has been reported among essential tremor (ET) patients, very little is known about the relation between self-report measures of social anxiety, tremor severity and disability, and cognition. Methods. Sixty-three individuals diagnosed with ET took part in a comprehensive study examining neurocognition and behavioral functioning. A psychiatric diagnostic interview, three social anxiety questionnaires, and an idiographic-based behavioral assessment to pinpoint anxiety provoking situations and related distress were completed. Results. Thirty percent of the participants met diagnostic criteria for social anxiety disorder (SAD). Social anxiety questionnaires were negligibly related to tremor severity and disability. Idiographic behavioral assessment of subjective distress was moderately related to resting tremor severity and disability and strongly related to social anxiety questionnaires scores. Only one cognitive variable was related to tremor severity. Conclusions. These findings suggest that (a) self-report measures of social anxiety with ET patients may underestimate distress; (b) emphasis on tremor severity may be misleading; (c) tremor disability may be a more sensitive and functional measure related to cognition and effect; (d) SAD is wide spread and does not appear to be related to dysregulated executive function; and (e) development of an ET-specific measure of social anxiety is called for.

Biobehavioral intervention for older adults coping with essential tremor.

Four questions were addressed: (a) does biobehavioral intervention result in within-session reduction of tremor severity; (b) do relaxation and electromyographic (EMG) biofeedback training produce differential effects; (c) do within-session treatment effects generalize to daily performance; and (d) are reductions in tremor severity maintained at follow-up assessment? Three adults, ages 51, 77, and 83, each with a diagnosis of essential tremor (ET), and a long standing history of tremor of the hands uncontrolled by medication, took part. A repeated pre-post-training single-case experimental design embedded within a sequential A--B--C--D design was used; in addition, 1 participant received a return to the B phase. Outcome measures included within-session clinical and self-ratings of tremor severity, surface electromyography (sEMG) of forearm muscles, and daily self-ratings of tremor at home. Tremor was measured while participants engaged in eating or drinking tasks. The Behavioral Relaxation Scale (BRS) served as a process measure to assess relaxation proficiency. Clinical ratings of tremor and the BRS had high interobserver agreement. Visual inspection and statistical tests of single-case data were used to evaluate outcomes. Each participant showed significant within-session improvements on various measures of tremor and improvement during intervention as compared to baseline phases. There were no clear-cut differences between relaxation and biofeedback phases. Improvements declined somewhat at a 12-week follow-up. Relationships among measures of tremor are discussed. Biobehavioral interventions hold promise for older adults coping with ET. Further research is needed using an array of biobehavioral measures to assess intervention outcome.

Validity of clinical and patient ratings of tremor disability among older adults.

OBJECTIVE: To evaluate the validity of the clinical tremor disability interview using a performance-based measure, patient ratings of tremor disability, and bedside tremor severity ratings of upper extremity (UE) action/intention (A/I) and postural (P) tremor. METHOD: Sixteen older adult essential tremor patients (mean age=75.4 years, sd=5.7 years) took part in a study evaluating the validity of clinical and self-rating scales of tremor disability. A neurologist obtained bedside clinical ratings of UE A/I and P tremor of each limb and completed a clinical tremor disability rating. A second investigator, blind to neurological exam results obtained a clinical disability rating using the same measure, patient rated tremor disability ratings and conducted a performance-based disability assessment. RESULTS: Clinical tremor disability ratings were not significantly related to functional performance-based or patient ratings of tremor disability. Bedside clinical ratings of tremor severity also were not associated with clinical or patient-rated tremor disability. Patient ratings were significantly correlated with performance-based ratings. CONCLUSIONS: Further research is needed to validate a brief, sensitive clinical rating scale of tremor disability among older adults. Use of bedside ratings of tremor severity may be problematic and possibly estimate tremor disability. Empirical evaluation of differences in rating methods needs to be directly addressed.