Search

Background Methods Results Conclusion Latin America has played a crucial role in advancing our understanding of Huntington's disease (HD). However, previous global reviews include limited data from Latin America. It is possible that English‐based medical search engines may not capture all the relevant studies.We searched databases in Spanish, Portuguese, and English. The names of every country in Latin America in English‐based search engines were used to ensure we found any study that had molecular ascertainment and provided general epidemiological information or subpopulation data. Additionally, we contacted experts across the region.The search strategy yielded 791 citations; 24 studies met inclusion criteria, representing 12 of 36 countries. The overall pooled prevalence was 0.64 per 100,000 (prediction interval, 0.06–7.22); for cluster regions, it was 54 per 100,000 (95% CI, 34.79–84.92); for juvenile HD, it was 8.7% (prediction interval, 5.12–14.35), and 5.9% (prediction interval, 2.72–13.42) for late‐onset HD. The prevalence was higher for Mexico, Peru, and Brazil. However, there were no significant differences between Central America and the Caribbean versus South America.The prevalence of HD appears to be similar across Latin America. However, we infer that our findings are underestimates, in part because of limited research and underdiagnosis of HD because of limited access to molecular testing and the availability of neurologists and movement disorders specialists. Future research should focus on identifying pathways to improve access to molecular testing and education and understanding differences among different ancestral groups in Latin America. © 2024 International Parkinson and Movement Disorder Society. [ABSTRACT FROM AUTHOR]

Background and purpose: The aim was to test the specificity of phenomenological criteria for functional tic‐like behaviours (FTLBs). The European Society for the Study of Tourette Syndrome (ESSTS) criteria for the diagnosis of FTLBs include three major criteria: age at symptom onset ≥12 years, rapid evolution of symptoms and specific phenomenology. Methods: Children and adolescents with primary tic disorders have been included in a Registry in Calgary, Canada, since 2017. Using the Yale Global Tic Severity Scale, the proportion of youth with primary tic disorders who met specific phenomenological criteria for FTLBs at first visit was assessed: (1) having ≥1 specific complex motor tic commonly seen in FTLBs, including complex arm/hand movements, self‐injurious behaviour, blocking, copropraxia; (2) having ≥1 specific complex phonic tic commonly seen in FTLBs, including saying words, phrases, disinhibited speech, coprolalia; (3) having a greater number of complex tics than simple tics. Children seen for the first time between 2017 and 2019 and between 2021 and 2023 were analysed separately. Results: Of 156 participants included between 2017 and 2019, high specificity (94.2%) of the age at onset criterion (≥12 years) and of having at least two complex motor behaviours and one complex phonic behaviour at first visit (96.2%) was observed. Some of the complex motor tics had lower specificity. The specificity of the FTLB diagnostic criterion of having more complex tics than simple tics was 89.7%. There was no significant difference in specificity of the criteria for children seen for the first time between 2017 and 2019 and between 2021 and 2023 (n = 149). Conclusion: This information supports the use of the ESSTS criteria for FTLBs in clinical practice. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background and purpose: Very little is known about the long‐term prognosis of patients with functional tic‐like behaviours (FTLBs). We sought to characterize the trajectory of symptom severity over a 12‐month period. Methods: Patients with FTLBs were included in our prospective longitudinal child and adult clinical tic disorder registries at the University of Calgary. Patients were prospectively evaluated 6 and 12 months after their first clinical visit. Tic inventories and severity were measured with the Yale Global Tic Severity Scale (YGTSS). Results: Eighty‐three youths and adults with FTLBs were evaluated prospectively until April 2023. Mean YGTSS total tic severity scores were high at baseline, with a mean score of 29.8 points (95% confidence interval [CI] = 27.6–32.1). Fifty‐eight participants were reevaluated at 6 months, and 32 participants were reevaluated at 12 months. The YGTSS total tic severity score decreased significantly from the first clinical visit to 6 months (raw mean difference = 8.9 points, 95% CI = 5.1–12.7, p < 0.0001), and from 6 to 12 months (raw mean difference = 6.4 points, 95% CI = 0.8–12.0, p = 0.01). Multivariable linear regression demonstrated that tic severity at initial presentation and the presence of other functional neurological symptoms were associated with higher YGTSS total tic scores at 6 months, whereas younger age at baseline, receiving cognitive behavioural therapy for anxiety and/or depression, and prescription of selective serotonin reuptake inhibitors were associated with lower YGTSS total tic scores at 6 months. Conclusions: We observed a meaningful improvement in tic severity scores in youth and adults with FTLBs over a period of 6–12 months. [ABSTRACT FROM AUTHOR]

Introduction: Eight members of the International Parkinson's Disease and Movement Disorders Society Tic and Tourette Syndrome Study Group formed a subcommittee to discuss further barriers to practice guideline implementation. Based on expert opinion and literature review, the consensus was that practice variations continue to be quite broad and that many barriers in different clinical settings might negatively influence the adoption of the American Academy of Neurology and the European Society for the Study of Tourette Syndrome published guidelines. Objectives: 1) To identify how clinical practices diverge from the existing American Academy of Neurology and European Society for the Study of Tourette Syndrome guidelines, and 2) to identify categories of barriers leading to these clinical care gaps. Methods and analysis: This article presents the methodology of a planned cross-sectional survey amongst healthcare professionals routinely involved in the clinical care of patients with persistent tic disorders, aimed at 1) identifying how practices diverge from the published guidelines; and 2) identifying categories of barriers leading to these clinical care gaps. Purposeful sampling methods are used to identify and recruit critical persistent tic disorders stakeholders. The analysis will use descriptive statistics. [ABSTRACT FROM AUTHOR]

Background Youth and parent engagement is a key component of clinical research. There are many ways to actively and meaningfully engage youth and parents as integral members of research teams, for example, through ad-hoc committees, advisory councils, or as co-leads on projects. When youth and parents are actively and meaningfully engaged in research projects, they share knowledge from their lived experiences to improve the quality and relevance of research. Methods We describe a case-based example of engaging youth and parent research partners when co-designing a questionnaire to assess preferences for pediatric headache treatments, from both a researcher and youth/parent perspective. We also summarize best practices in patient and family engagement from the literature and pertinent guidelines to assist researchers with integrating patient and family engagement into their studies. Results As researchers, we felt that the integration of a youth and parent engagement plan into our study significantly altered and strengthened questionnaire content validity. We encountered challenges throughout the process and detailed these experiences to help educate others about challenge mitigation and best practices in youth and parent engagement. As youth and parent partners, we felt that engaging in the process of questionnaire development was an exciting and empowering opportunity, and that our feedback was valued and integrated. Conclusions By sharing our experience, we hope to catalyze thought and discussion around the importance of youth and parent engagement in pediatric research, with the goal of stimulating more appropriate, relevant, and high-quality pediatric research and clinical care in the future. [ABSTRACT FROM AUTHOR]