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Assessing the educational needs of physicians in the management of patients with Tourette syndrome: results of a United States survey on practicing clinicians and caregivers

Published online by Cambridge University Press:  18 February 2022

Sylvie Stacy ,
Gregory D. Salinas ,
Emily Belcher ,
Amanda Wilhelm ,
Jessica K. Alexander  and
Gregory W. Mattingly Open the ORCID record for Gregory W. Mattingly [Opens in a new window]
Sylvie Stacy
Affiliation:
Department of Research and Assessment, CE Outcomes, LLC, Birmingham, AL, USA
Gregory D. Salinas
Affiliation:
Department of Research and Assessment, CE Outcomes, LLC, Birmingham, AL, USA
Emily Belcher
Affiliation:
Department of Research and Assessment, CE Outcomes, LLC, Birmingham, AL, USA
Amanda Wilhelm
Affiliation:
Movement Disorders and Psychiatry, Teva Pharmaceutical Industries, West Chester, PA, USA
Jessica K. Alexander
Affiliation:
Neurology, Teva Pharmaceutical Industries, West Chester, PA, USA
Gregory W. Mattingly*
Affiliation:
Department of Psychiatry, Washington University, St. Louis, MO, USA
*
* Author for correspondence: Gregory W. Mattingly, MD Email: greg@mattingly.com
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Abstract

Objective

To better understand current practices of U.S.-based physicians in the management of Tourette syndrome (TS) and identify gaps that may be addressed by future education.

Methods

Two survey instruments were developed to gather data on management of TS and perceptions from physicians and caregivers of children with TS. The clinician survey was developed in consultation with a TS physician expert and utilized clinical vignettes to assess and quantify practice patterns. The caregiver survey was adapted from the clinician survey and other published studies and gathered details on diagnosis, treatment, and perceptions regarding management.

Results

Data included responses from 138 neurologists (including 57 pediatric neurologists), 162 psychiatrists (including 42 pediatric psychiatrists), and 67 caregivers. Most (65%) pediatric neurologists rely solely on clinical findings to make a diagnosis, whereas the majority of other specialists utilize additional testing (eg, neuroimaging, lab testing, and genetics). Most psychiatrists (96%) utilize standardized criteria to make a diagnosis, whereas 22% of neurologists do not. Many physicians (44% of psychiatrists and 20% of neurologists) use pharmacotherapy to treat a patient with “slightly bothersome” tics and no functional impairment, whereas caregivers favored behavioral therapy. Most (76%) caregivers preferred to make the final treatment decision, whereas 80% of physicians preferred equal or physician-directed decision-making.

Conclusions

This study provides insight into practice patterns and perceptions of U.S.-based neurologists and psychiatrists in managing TS. Results highlight the potential value of physician education, including diagnostic approach, tic management and monitoring, involvement of caregivers in decision-making, and updates on TS management.

Keywords

Tourette syndromesurveyeducationmanagementtics
Type
Original Research
Information
CNS Spectrums , Volume 28 , Issue 3 , June 2023 , pp. 343 - 350
Copyright
© Washington University School of Medicine, 2022

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References

American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. 5th ed. Arlington, VA: American Psychiatric Association; 2013.Google Scholar
Singer, HS. Tourette’s syndrome: from behaviour to biology. Lancet Neurol. 2005;4(3):149–159.CrossRefGoogle ScholarPubMed
Knight, T, Steeves, T, Day, L, Lowerison, M, Jette, N, Pringsheim, T. Prevalence of tic disorders: a systematic review and meta-analysis. Pediatr Neurol. 2012;47(2):77–90.CrossRefGoogle ScholarPubMed
Claussen, AH, Bitsko, RH, Holbrook, JR, Bloomfield, J, Giordano, K. Impact of Tourette syndrome on school measures in a nationally representative sample. J Dev Behav Pediatr. 2018;39(4):335–342.CrossRefGoogle Scholar
Storch, EA, Merlo, LJ, Lack, C, et al. Quality of life in youth with Tourette’s syndrome and chronic tic disorder. J Clin Child Adolesc Psychol. 2007;36(2):217–227.CrossRefGoogle ScholarPubMed
Pringsheim, T, Okun, MS, Muller-Vahl, K, et al. Practice guideline recommendations summary: treatment of tics in people with Tourette syndrome and chronic tic disorders. Neurology. 2019;92(19):896–906.CrossRefGoogle ScholarPubMed
Waldon, K, Hill, J, Termine, C, Balottin, U, Cavanna, AE. Trials of pharmacological interventions for Tourette syndrome: a systematic review. Behav Neurol. 2013;26(4):265–273.CrossRefGoogle ScholarPubMed
Thomas, R, Cavanna, AE. The pharmacology of Tourette syndrome. J Neural Transm (Vienna). 2013;120(4):689–694.CrossRefGoogle ScholarPubMed
Quezada, J, Coffman, KA. Current approaches and new developments in the pharmacological management of Tourette syndrome. CNS Drugs. 2018;32(1):33–45.CrossRefGoogle ScholarPubMed
Capriotti, MR, Himle, MB, Woods, DW. Behavioral treatments for Tourette syndrome. J Obsessive Compuls Relat Disord. 2014;3(4):415–420.CrossRefGoogle ScholarPubMed
McGuire, JF, Piacentini, J, Brennan, EA, et al. A meta-analysis of behavior therapy for Tourette syndrome. J Psychiatr Res. 2014;50:106–112.CrossRefGoogle ScholarPubMed
Andren, P, Aspvall, K, de la Cruz, L F, et al. Therapist-guided and parent-guided internet-delivered behaviour therapy for paediatric Tourette’s disorder: a pilot randomised controlled trial with long-term follow-up. BMJ Open. 2019;9(2):e024685.CrossRefGoogle ScholarPubMed
Robertson, MM. The Gilles de la Tourette syndrome: the current status. Arch Dis Child Educ Pract Ed. 2012;97(5):166–175.CrossRefGoogle ScholarPubMed
Debes, NM, Hjalgrim, H, Skov, L. The presence of comorbidity in Tourette syndrome increases the need for pharmacological treatment. J Child Neurol. 2009;24(12):1504–1512.CrossRefGoogle ScholarPubMed
Cuenca, J, Glazebrook, C, Kendall, T, et al. Perceptions of treatment for tics among young people with Tourette syndrome and their parents: a mixed methods study. BMC Psychiatry. 2015;15:46.CrossRefGoogle ScholarPubMed
Ludlow, AK, Brown, R, Schulz, J. A qualitative exploration of the daily experiences and challenges faced by parents and caregivers of children with Tourette’s syndrome. J Health Psychol. 2018;23(14):1790–1799.CrossRefGoogle ScholarPubMed
Hollis, C, Pennant, M, Cuenca, J, et al. Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette syndrome: a systematic review and qualitative analysis. Health Technol Assess. 2016;20(4):1–450, vii–viii.CrossRefGoogle ScholarPubMed
Rivera-Navarro, J, Cubo, E, Almazan, J. The diagnosis of Tourette’s syndrome: communication and impact. Clin Child Psychol Psychiatry. 2009;14(1):13–23.CrossRefGoogle ScholarPubMed
Swain, JE, Scahill, L, Lombroso, PJ, King, RA, Leckman, JF. Tourette syndrome and tic disorders: a decade of progress. J Am Acad Child Adolesc Psychiatry. 2007;46(8):947–968.CrossRefGoogle ScholarPubMed
Murphy, TK, Lewin, AB, Storch, EA, Stock, S. Practice parameter for the assessment and treatment of children and adolescents with tic disorders. J Am Acad Child Adolesc Psychiatry. 2013;52(12):1341–1359.CrossRefGoogle ScholarPubMed
Martino, D, Pringsheim, TM, Cavanna, AE, et al. Systematic review of severity scales and screening instruments for tics: critique and recommendations. Mov Disord. 2017;32(3):467–473.CrossRefGoogle ScholarPubMed
Hirschtritt, ME, Lee, PC, Pauls, DL, et al. Lifetime prevalence, age of risk, and genetic relationships of comorbid psychiatric disorders in Tourette syndrome. JAMA Psychiatry. 2015;72(4):325–333.CrossRefGoogle ScholarPubMed
Kurlan, R, Como, PG, Miller, B, et al. The behavioral spectrum of tic disorders: a community-based study. Neurology. 2002;59(3):414–420.CrossRefGoogle ScholarPubMed
de la Cruz, L F, Rydell, M, Runeson, B, et al. Suicide in Tourette’s and chronic tic disorders. Biol Psychiatry. 2017;82(2):111–118.CrossRefGoogle Scholar
Robertson, MM. Mood disorders and Gilles de la Tourette’s syndrome: an update on prevalence, etiology, comorbidity, clinical associations, and implications. J Psychosom Res. 2006;61(3):349–358.CrossRefGoogle ScholarPubMed
Huisman-van Dijk, HM, Matthijssen, S, Stockmann, RTS, Fritz, AV, Cath, DC. Effects of comorbidity on Tourette’s tic severity and quality of life. Acta Neurol Scand. 2019;140(6):390–398.CrossRefGoogle ScholarPubMed
Cox, JH, Nahar, A, Termine, C, et al. Social stigma and self-perception in adolescents with Tourette syndrome. Adolesc Health Med Ther. 2019;10:75–82.Google ScholarPubMed
Peabody, JW, Luck, J, Glassman, P, et al. Measuring the quality of physician practice by using clinical vignettes: a prospective validation study. Ann Intern Med. 2004;141(10):771–780.CrossRefGoogle ScholarPubMed
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