Abstract
Objective: Tourette syndrome (TS) is a neuropsychiatric disorder that is highly associated with several comorbidities. Given the complex and multifaceted nature of TS, the condition is managed by a wide variety of practitioners in different disciplines. The goal of this study was to investigate health service delivery and care practices by clinicians who see TS patients across different geographic settings internationally.Methods: A comprehensive questionnaire was developed to assess clinical care resources for patients with TS and was sent to clinicians in Canada (CA), the United States (US), Europe (EU), and the United Kingdom (UK). Responses were compared quantitatively between geographic regions.Results: The majority of respondents, regardless of region, reported that fewer than 40% of their case-load are patients with tics. The accessibility of TS services varied among regions, as indicated by differences in wait times, telemedicine offerings, comorbidity management and the availability of behavioral therapies. First-line pharmacotherapy preferences varied among physicians in different geographical regions with CA respondents preferring alpha-2-adrenergic agonists and respondents from the UK and EU preferring dopamine receptor antagonists.Discussion: The results suggest that there is a scarcity of specialized TS clinics, potentially making access to services challenging, especially for patients newly diagnosed with TS. Differences in regional pharmacotherapeutic preferences are reflected in various published treatment guidelines in EU and North America. The lack of dedicated specialists and telemedicine availability, coupled with differences in comorbidity management, highlight the need for interprofessional care and holistic management to improve health care delivery to patients with TS.
Highlights
Tourette syndrome (TS) is a developmental neuropsychiatric disorder characterized by motor and vocal tics that is estimated to affect 0.52–0.77% of children and 0.05% of adults [1, 2]
The survey was distributed to 484 clinicians; 123 clinicians responded, for an overall response rate of 25%
This study investigated the patterns of health care delivery to patients with TS in different geographic regions
Summary
Tourette syndrome (TS) is a developmental neuropsychiatric disorder characterized by motor and vocal tics that is estimated to affect 0.52–0.77% of children and 0.05% of adults [1, 2]. Its usefulness is limited by a lack of welltrained practitioners, high costs, and by patients’ ability to devote the time and effort it requires [6]; pharmacological treatment is required for many patients with TS. The dopamine receptor antagonists (DRAs) are often effective but can be associated with potential serious adverse effects [7]. Given their more favorable side effect profile, the alpha-2 adrenergic receptor agonists (A2AAs) clonidine and guanfacine are commonly used in the treatment of TS [8], though their efficacy is lower than that of the DRAs, and their utility is further limited by their own side effects [9]. Other pharmacological agents have only limited and weak evidence to support their use
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