Premonitory Urge in Patients with Tics and Functional Tic-like Behaviors.

BACKGROUND: Premonitory urges (PU) are well described in primary tics, but their frequency and intensity in functional tic-like behaviors (FTLB) are unclear. OBJECTIVE: To study the experience of PU in patients with FTLB. METHODS: We compared the results of the premonitory urge for tics scale (PUTS) in adults with tics and FTLB in the University of Calgary Adult Tic Registry. RESULTS: We included 83 patients with tics and 40 with FTLB. When comparing patients with tics, FTLB with tics and FTLB only, we did not detect significant differences either in the total PUTS score (P = 0.39), or in any of the individual PUTS item sub-scores (P values ranging between 0.11 and 0.99). CONCLUSIONS: Patients with FTLB report PU at similar frequency and intensity to patients with tics. This finding confirms that PU are not a useful feature to discriminate FTLB from tics.

What are the Key Phenomenological Clues to Diagnose Functional Tic-Like Behaviors in the Pandemic Era?

BACKGROUND: Functional tic-like behaviors (FTLBs) can be difficult to distinguish from tics. OBJECTIVES: To describe the phenomenology of FTLBs in youth and assess the movements and vocalizations most suggestive of the diagnosis. METHODS: We compared the phenomenology of tics between youth (<20 yr) with FTLBs and with primary tics from our Registry in Calgary, Canada. RESULTS: Two hundred and thirty-six youths were included: 195 with primary tics (75% males; mean age: 10.8 yr) and 41 with FTLBs (98% females; 16.1 yr). In the bivariate models, FTLBs were most associated with copropraxia (OR = 15.5), saying words (OR = 14.5), coprolalia (OR = 13.1), popping (OR = 11.0), whistling (OR = 9.8), simple head movements (OR = 8.6), and self-injurious behaviors (OR = 6.9). In the multivariable model, FTLBs were still associated with saying words (OR = 13.5) and simple head movements (OR = 6.3). Only 12.2% of youth with FTLBs had throat clearing tics (OR = 0.2). CONCLUSIONS: This study shall help physicians diagnose youth with FTLBs according to the presence/association of specific movements and vocalizations.

Have We Forgotten What Tics Are? A Re-Exploration of Tic Phenomenology in Youth with Primary Tics.

Background: The first systematic description of tics in a large sample was in 1978. Objectives: To assess the phenomenology of tics in youth and investigate how age and sex influence tic phenomenology. Methods: Children and adolescents with primary tic disorders have been prospectively included in our Registry in Calgary, Canada, since 2017. We examined tic frequency and distribution using the Yale Global Tic Severity Scale, differences between sexes, and changes in tic severity with age and with mental health comorbidities. Results: A total of 203 children and adolescents with primary tic disorders were included (76.4% males; mean age = 10.7 years, 95% CI = 10.3-11.1). At first assessment, the most common simple motor tics were eye blinking (57%), head jerks/movements (51%), eye movements (48%) and mouth movements (46%); 86% had at least one simple facial tic. The most frequent complex motor tics were tic-related compulsive behaviors (19%). Throat clearing was the most common simple phonic tic (42%); 5% only had coprolalia. Females had higher frequency and intensity of motor tics than males (P = 0.032 and P = 0.006, respectively), associated with greater tic-related impairment (P = 0.045). Age was positively correlated with the Total Tic Severity Score (coefficient 0.54, P = 0.005), along with the number, frequency and intensity of motor tics but not with their complexity. Psychiatric comorbidities were associated with greater tic severity. Conclusions: Our study suggests that age and sex affect clinical presentation in youth with tics. The phenomenology of tics in our sample was similar to the 1978 description of tics, and contrasts with functional tic-like behaviors.

The Tourette OCD Alberta Network: Development of a Continuing Professional Development Program for Community Based Mental Health Therapists.

The Tourette OCD Alberta Network (TOAN) supports mental health therapists to improve the delivery of care to patients with Tourette syndrome (TS) and OCD in Alberta. We evaluated the professional development needs of health care workers to develop a continuing professional development (CPD) webinar series. Health care workers demonstrated an urgent need to access a CPD program grounded in evidenced based knowledge about TS and OCD. While 80% of health care workers treated children with TS and OCD, 50% had no formal training. A curriculum consisting of a series of twelve live, online webinars was developed and delivered between September 2020 and June 2021, covering a range of clinical topics. The webinars were attended on average by 63 attendees, with the outcome of a positive knowledge gain. In future, the educational program will need to reflect the ongoing developing clinical understanding of TS and OCD.

Developing a provincial patient support network for children and families affected by Tourette syndrome and/or obsessive-compulsive disorder: results of a stakeholder consultation.

BACKGROUND: Tourette syndrome and OCD are disorders that frequently occur in children and cause a high level of disability. In Alberta there is a huge delivery gap in providing healthcare services for children with TS and OCD. A stakeholder consultation was performed to ascertain how service delivery could be improved across the province and to inform the development of a provincial information and support organization, the Tourette OCD Alberta Network. METHODS: A mixed-methods study was employed: 10 parents were recruited for interview and 140 parents responded to a survey. RESULTS: Qualitative data showed there was often an absence of a clear pathway to access healthcare for people with TS and OCD. The negative impact of not receiving treatment, information, and resources in a timely and prompt manner was also revealed. Good clinical practice existed across the province but too often it was hindered by a shortage of knowledge about TS and OCD. In schools, learning for students with TS and OCD was also impaired by educators' lack of knowledge and preparedness in relation to the disorders. CONCLUSIONS: This study identified ways that challenges with healthcare access, school learning, and seeking information can be overcome. Skills-based training webinars, educational outreach in schools, and peer support were recognized as actions for improving healthcare outcomes for people with TS and OCD. The aim of the Tourette OCD Alberta Network is to provide services and support that directly address the healthcare service delivery shortfalls shown in this study.