An International Survey of Health Care Services Available to Patients With Tourette Syndrome

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.

European clinical guidelines for Tourette syndrome and other tic disorders—version 2.0. Part II: psychological interventions

“…Given the limited availability of therapists trained in delivering BT for patients with tic disorders [ 48 ], focus on dissemination and adaptation of treatment delivery has increased in recent years. New modalities have been proposed to make BT more accessible, primarily by reducing the number of therapists needed and/or reducing the need for travel.…”

Tourette syndrome research highlights from 2021

“… 113 This is also reflected by an excellent review highlighting the scarcity of specialized TS clinics and dedicated experts. 114 This international group investigated health service delivery and care practices by clinicians in different geographical settings (Canada, US, Europe, and the United Kingdom). The results suggested that there is a scarcity of specialized TS clinical care in all investigated regions.…”

Mothers' accounts of mealtime and feeding challenges for children with Tourette syndrome or persistent tic disorders

“…For example, Thullen and Bonsall ( 14 ) found that disruptive mealtime behaviour, food refusal and mealtime rigidity were all independently associated with increased stress in parents of children with ASD. Mothers of children with a tic disorder may also benefit from interventions to reduce mealtime-related stress, however little support is currently available for these challenges ( 42 , 45 ). Maternal accounts indicated stress/conflict avoidance as the main overarching goal of mealtimes, which has been shown to be the most common mealtime goal in parents of children aged 1–16 years ( 46 ).…”