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Therapist-guided and parent-guided internet-delivered behaviour therapy for paediatric Tourette’s disorder: a pilot randomised controlled trial with long-term follow-up
  1. Per Andrén1,2,
  2. Kristina Aspvall1,2,
  3. Lorena Fernández de la Cruz1,2,
  4. Paulina Wiktor3,
  5. Sofia Romano3,
  6. Erik Andersson1,
  7. Tara Murphy4,5,
  8. Kayoko Isomura1,2,
  9. Eva Serlachius1,2,
  10. David Mataix-Cols1,2
  1. 1 Centre for Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden
  2. 2 Stockholm Health Care Services, Stockholm County Council, Stockholm, Sweden
  3. 3 Division of Psychology, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden
  4. 4 Tourette Syndrome Clinic, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  5. 5 Institute of Child Health, University College London, London, UK
  1. Correspondence to Per Andrén; per.andren{at}ki.se

Abstract

Objective Behaviour therapy (BT) for Tourette’s disorder (TD) and persistent (chronic) motor or vocal tic disorder (PTD) is rarely available. We evaluated the feasibility of adapting two existing BT protocols for TD/PTD (habit reversal training (HRT) and exposure and response prevention (ERP)) into a therapist-guided and parent-guided online self-help format.

Design A pilot, single-blind, parallel group randomised controlled trial.

Setting A specialist outpatient clinic in Sweden.

Participants Twenty-three young people with TD/PTD, aged 8–16.

Interventions Two 10-week therapist-guided and parent-guided internet-delivered programmes (called BIP TIC HRT and BIP TIC ERP).

Outcome The primary outcome measure was the Yale Global Tic Severity Scale. Blinded evaluators rated symptoms at baseline, post-treatment and 3-month follow-up (primary endpoint). All participants were naturalistically followed up to 12 months after treatment.

Results Patients and parents rated the interventions as highly acceptable, credible and satisfactory. While both interventions resulted in reduced tic-related impairment, parent-rated tic severity and improved quality of life, only BIP TIC ERP resulted in a significant improvement on the primary outcome measure. Within-group effect sizes and responder rates were, respectively: d=1.12 and 75% for BIP TIC ERP, and d=0.50 and 55% for BIP TIC HRT. The therapeutic gains were maintained up to 12 months after the end of the treatment. Adverse events were rare in both groups. The average therapist support time was around 25 min per participant per week.

Conclusions Internet-delivered BT has the potential to greatly increase access to evidence-based treatment for young people with TD/PTD. Further evaluation of the efficacy and cost-effectiveness of this treatment modality is warranted.

Trial registration number NCT02864589; Pre-results.

  • behaviour therapy
  • persistent (chronic) motor or vocal tic disorder
  • Tourette’s disorder
  • telemedicine

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Footnotes

  • Patient consent for publication Not required.

  • Contributors The trial was designed by DM-C, ES, EA and PA. PA, with assistance from TM, developed the treatment content. PA was the trial coordinator. Treatment was provided by PA, KA, PW and SR. Statistical analyses were performed by PA, in collaboration with LFC, EA and KI. PA drafted the manuscript, in collaboration with DM-C. The manuscript was reviewed and revised by all authors who have also read and approved the final version.

  • Funding This work was supported by the Stockholm County Council (PPG project 2016-0108). Dr Murphy was supported by the NIHR Great Ormond Street Hospital Biomedical Research Centre.

  • Competing interests LFC and DM-C receive royalties for contributing articles to UpToDate, Wolters Kluwer Health.

  • Ethics approval The study protocol was approved by the Regional Ethical Review Board in Stockholm, Sweden (reference number 2015/938-31/4).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The data are pseudonymised according to national (Swedish) and EU legislation, and cannot be anonymised and published in an open repository. The data can be made available upon reasonable request on a case by case basis according to the current legislation and ethical permits. Requests for access can be made to the Karolinska Institutet’s Research Data Office at rdo@ki.se.

  • Author note A preprint of this article was previously deposited in PsyArXiv (https://psyarxiv.com/dp3qz). DOI: 10.31234/osf.io/dp3qz

  • Presented at Preliminary findings were reported at the European Society for the Study of Tourette Syndrome (ESSTS) conferences in Seville, 16 June 2017, and Copenhagen, 13 June 2018.

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