Perspectives from Adults with Tourette Syndrome on Research Priorities and Registry Development: A Focus Group Study.

Purpose: Adults with Tourette syndrome (TS) have worse mental health, physical health, and quality of life than the general population. The factors contributing to negative outcomes across multiple health domains in adults with TS remain uncertain, in part due to a lack of longitudinal studies in this population. In attempt to address these knowledge gaps, our center has initiated development of a regional registry for adults with TS. During the goal-setting and design phase of registry development, we conducted focus groups with adults with TS to identify research issues of greatest importance to this population and to obtain feedback on design and implementation of an adult TS registry. Patients and Methods: Participants were recruited from a tertiary care adult TS clinic and from institutional research registries. Focus groups were conducted online and were moderated by a qualitative research expert. Qualitative data analysis was performed using an iterative inductive/deductive approach. Results: Across four focus groups, adult TS participants (n=22) expressed a variety of research priorities, including developing more effective treatments for tics, identifying risk factors for tic persistence into adulthood, clarifying the interaction between TS symptoms and women's health, clarifying the relationships between TS and other mental and physical health disorders, and addressing day-to-day living issues. Focus group participants were generally enthusiastic about creation of an adult TS registry. They indicated that adults with TS are more likely to engage with a registry that logistically accommodates participants (eg, by offering a wide range of visit times, by providing telehealth options) and that fosters bidirectional interaction (eg, by disseminating results regularly, by involving participants in registry design and implementation, by notifying participants of support resources). Conclusion: Focus group input clarifies the research priorities of adults with TS and will inform the ongoing development of an adult TS registry.

The Association of Quality of Life with Psychosocial Factors in Adolescents with Tourette Syndrome.

Individuals with Tourette syndrome (TS) have poorer quality of life (QoL) than their peers, yet factors contributing to poor QoL in this population remain unclear. Research to date has predominantly focused on the impact of tics and psychiatric symptoms on QoL in TS samples. The aim of this cross-sectional, multi-informant study was to identify psychosocial variables that may impact adolescent QoL in TS. Thirty-eight adolescents aged 13 to 17 with TS and 28 age-matched controls participated with a caregiver. No group differences were found on QoL, although the TS group reported reduced QoL compared to population normative data. In the TS group, reduced QoL was associated with lower self-esteem, poorer family functioning, higher stress, and greater depression and anxiety; QoL was unrelated to tic severity. In regression analyses, after adjusting for covariates, family functioning was the strongest predictor of QoL. These results emphasize the need to further explore the influence of psychosocial factors, particularly family functioning, on QoL in adolescents with TS.

Dimensional Assessment of Depression and Anxiety in a Clinical Sample of Adults With Chronic Tic Disorder.

OBJECTIVE: Among adults with Tourette syndrome, depression and anxiety symptoms are widely prevalent and consistently associated with poor quality of life. Important knowledge gaps remain regarding mood and anxiety dimensions of the adult Tourette syndrome phenotype. Taking a dimensional approach, this study sought to determine the prevalence, severity, and clinical correlates of depression and anxiety symptoms in a clinical sample of adults with Tourette syndrome and other chronic tic disorders. METHODS: A retrospective chart review was conducted of all adults with a chronic tic disorder presenting to a tertiary care Tourette syndrome clinic between December 2020 and July 2022. Information extracted during chart review included data from scales administered as part of routine care: Quality of Life in Neurological Disorders (Neuro-QoL) Depression Short Form, Neuro-QoL Anxiety Short Form, Adult Attention-Deficit/Hyperactivity Disorder Self-Report Screening Scale, Dimensional Obsessive-Compulsive Scale, and Yale Global Tic Severity Scale. Relationships between variables were examined by conducting between-group, correlation, and multivariable regression analyses. RESULTS: Data from 120 adult patients with a chronic tic disorder (77 men and 43 women) were analyzed. Neuro-QoL Anxiety scores were elevated in 66% of the cohort; Neuro-QoL Depression scores were elevated in 26%. Neuro-QoL Anxiety scores were significantly higher than general population norms, whereas Neuro-QoL Depression scores were not. After adjustment for covariates, depressive and anxiety symptom severity scores were significantly associated with each other and with obsessive-compulsive disorder symptom severity but not with tic severity. Sex-based differences emerged in the analyses. CONCLUSIONS: Among adults with chronic tic disorder, anxiety symptoms were more prevalent and severe than depressive symptoms, co-occurring psychiatric symptoms were more tightly linked with each other than with tic severity, and sex-based differences were evident.

Altered Interoceptive Sensibility in Adults With Chronic Tic Disorder.

Background: Interoception refers to the sensing, interpretation, integration, and regulation of signals about the body's internal physiological state. Interoceptive sensibility is the subjective evaluation of interoceptive experience, as assessed by self-report measures, and is abnormal in numerous neuropsychiatric disorders. Research examining interoceptive sensibility in individuals with chronic tic disorders (CTDs), however, has yielded conflicting results, likely due to methodologic differences between studies and small sample sizes. Objective: We sought to compare interoceptive sensibility between adults with CTD and healthy controls, adjusting for co-occurring psychiatric symptoms, and to examine the relationship of interoceptive sensibility with other CTD clinical features, in particular, premonitory urge. Methods: We recruited adults with CTDs and sex- and age-matched healthy controls to complete the Multidimensional Assessment of Interoceptive Awareness, Version 2 (MAIA-2), as well as a battery of measures assessing psychiatric symptoms prevalent in CTD populations. CTD participants additionally completed scales quantifying tic severity, premonitory urge severity, and health-related quality of life. We conducted between-group contrasts (Wilcoxon rank-sum test) for each MAIA-2 subscale, analyzed the effect of psychiatric symptoms on identified between-group differences (multivariable linear regression), and examined within-group relationships between MAIA-2 subscales and other clinical measures (Spearman rank correlations, multivariable linear regression). Results: Between adults with CTD (n = 48) and healthy controls (n = 48), MAIA-2 Noticing and Not-Worrying subscale scores significantly differed. After adjusting for covariates, lower MAIA-2 Not-Worrying subscale scores were significantly associated with female sex (ß = 0.42, p < 0.05) and greater severity of obsessive-compulsive symptoms (ß = -0.028, p < 0.01), but not with CTD diagnosis. After adjusting for severity of tics and obsessive-compulsive symptoms, a composite of MAIA-2 Noticing, Attention Regulation, Emotional Awareness, Self-Regulation, Body Listening, and Trusting subscales (ß = 2.52, p < 0.01) was significantly associated with premonitory urge. Conclusion: Study results revealed three novel findings: adults with CTD experience increased anxiety-associated somatization and increased general body awareness relative to healthy controls; anxiety-associated somatization is more closely associated with sex and obsessive-compulsive symptoms than with CTD diagnosis; and increased general body awareness is associated with greater severity of premonitory urges.