Literature DB >> 33716822

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

Tracy Bhikram1, Rana Elmaghraby1,2, Elia Abi-Jaoude1,3, Paul Sandor1,2.   

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.
Copyright © 2021 Bhikram, Elmaghraby, Abi-Jaoude and Sandor.

Entities:  

Keywords:  Tourette syndrome; clinician survey; comorbidity; health care delivery; health services; pharmacotherapy

Year:  2021        PMID: 33716822      PMCID: PMC7953144          DOI: 10.3389/fpsyt.2021.621874

Source DB:  PubMed          Journal:  Front Psychiatry        ISSN: 1664-0640            Impact factor:   4.157


  44 in total

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2.  Quality of life in young people with Tourette syndrome: a controlled study.

Authors:  C M Eddy; R Rizzo; M Gulisano; A Agodi; M Barchitta; P Calì; M M Robertson; A E Cavanna
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3.  Children with Tourette Syndrome in the United States: Parent-Reported Diagnosis, Co-Occurring Disorders, Severity, and Influence of Activities on Tics.

Authors:  Sara Beth Wolicki; Rebecca H Bitsko; Melissa L Danielson; Joseph R Holbrook; Benjamin Zablotsky; John T Walkup; Douglas W Woods; Jonathan W Mink
Journal:  J Dev Behav Pediatr       Date:  2019 Jul/Aug       Impact factor: 2.225

4.  Patterns and correlates of tic disorder diagnoses in privately and publicly insured youth.

Authors:  Mark Olfson; Stephen Crystal; Tobias Gerhard; Cecilia Huang; James T Walkup; Lawrence Scahill; John T Walkup
Journal:  J Am Acad Child Adolesc Psychiatry       Date:  2011-02       Impact factor: 8.829

5.  Treatment practices in Tourette syndrome: the European perspective.

Authors:  Hugh Rickards; Andrea E Cavanna; Rhiannon Worrall
Journal:  Eur J Paediatr Neurol       Date:  2011-12-16       Impact factor: 3.140

Review 6.  Practice parameter for the assessment and treatment of children and adolescents with tic disorders.

Authors:  Tanya K Murphy; Adam B Lewin; Eric A Storch; Saundra Stock
Journal:  J Am Acad Child Adolesc Psychiatry       Date:  2013-12       Impact factor: 8.829

7.  Understanding disability in Tourette syndrome.

Authors:  Tamara Pringsheim; Anthony Lang; Roger Kurlan; Michelle Pearce; Paul Sandor
Journal:  Dev Med Child Neurol       Date:  2008-10-24       Impact factor: 5.449

Review 8.  Health-related quality of life in Gilles de la Tourette syndrome: a decade of research.

Authors:  Andrea Eugenio Cavanna; Kate David; Valentina Bandera; Cristiano Termine; Umberto Balottin; Anette Schrag; Caroline Selai
Journal:  Behav Neurol       Date:  2013       Impact factor: 3.342

9.  Perceptions of treatment for tics among young people with Tourette syndrome and their parents: a mixed methods study.

Authors:  José Cuenca; Cris Glazebrook; Tim Kendall; Tammy Hedderly; Isobel Heyman; Georgina Jackson; Tara Murphy; Hugh Rickards; Mary Robertson; Jeremy Stern; Penny Trayner; Chris Hollis
Journal:  BMC Psychiatry       Date:  2015-03-11       Impact factor: 3.630

10.  Outpatient Treatment of Tic Disorders Among Children and Adults.

Authors:  Joseph L Smith; Sean Gregory; Nicole McBride; Tanya K Murphy; Eric A Storch
Journal:  Mov Disord Clin Pract       Date:  2017-03-11
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  6 in total

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Journal:  J Clin Med       Date:  2022-01-04       Impact factor: 4.241

2.  Clinical Practice Patterns in Tic Disorders Among Movement Disorder Society Members.

Authors:  Christos Ganos; Harini Sarva; Lille Kurvits; Donald L Gilbert; Andreas Hartmann; Yulia Worbe; Pablo Mir; Kirsten R Müller-Vahl; Alexander Münchau; David Shprecher; Harvey S Singer; Wissam Deeb; Michael S Okun; Irene A Malaty; Mark Hallett; Marina Aj Tijssen; Tamara Pringsheim; Davide Martino
Journal:  Tremor Other Hyperkinet Mov (N Y)       Date:  2021-10-28

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

Authors:  Sandra-Eve Bamigbade; Samantha L Rogers; Wendy Wills; Amanda K Ludlow
Journal:  Front Psychiatry       Date:  2022-08-01       Impact factor: 5.435

4.  "I'm in pain and I want help": An online survey investigating the experiences of tic-related pain and use of pain management techniques in people with tics and tic disorders.

Authors:  Evangeline Taylor; Seonaid Anderson; E Bethan Davies
Journal:  Front Psychiatry       Date:  2022-08-05       Impact factor: 5.435

Review 5.  Tourette syndrome research highlights from 2021.

Authors:  Andreas Hartmann; Per Andrén; Cyril Atkinson-Clement; Virginie Czernecki; Cécile Delorme; Nanette Marinette Debes; Natalia Szejko; Keisuke Ueda; Kevin Black
Journal:  F1000Res       Date:  2022-06-29

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

Authors:  Per Andrén; Ewgeni Jakubovski; Tara L Murphy; Katrin Woitecki; Zsanett Tarnok; Sharon Zimmerman-Brenner; Jolande van de Griendt; Nanette Mol Debes; Paula Viefhaus; Sally Robinson; Veit Roessner; Christos Ganos; Natalia Szejko; Kirsten R Müller-Vahl; Danielle Cath; Andreas Hartmann; Cara Verdellen
Journal:  Eur Child Adolesc Psychiatry       Date:  2021-07-27       Impact factor: 4.785

  6 in total

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