Tourette Syndrome (TS) is a disabling condition that affects around 1% of young people in England. It is characterised by persistent ‘tics’, which are uncontrolled, sudden, explosive, physical movements and vocal sounds which can be highly stigmatising, especially for teenagers, and can often lead to bullying, social exclusion, depression and self-harm. TS causes distress, social and psychological problems and reduced quality of life. TS is commonly treated by medication, but this can have unpleasant side effects such as drowsiness and weight gain. Behavioural treatments (talking therapies that target a person’s behaviours and thoughts) have been shown to reduce tics as effectively as medication.
Research has shown that young people and their families prefer behavioural treatments. However, there are very few specialist therapists trained to deliver them, and only around 20% of young people in England with TS can get access to behavioural treatment. To access the therapy young people and their families often need to travel large distances, which is expensive and time-consuming.
The problem of lack of access to behavioural treatments has prompted the development of remotely delivered (i.e. at a distance) behavioural interventions using technology and the internet. Different ways of providing therapies remotely include: telephone or Skype sessions with specialist therapists (known as ‘telemedicine’); therapist-guided online programmes; and ‘self-guided’ online therapy (without therapist support). However, there are too few specialist therapists to meet the demands for telemedicine and too few clients persist with self-guided online therapy.
We have chosen to test a therapist-guided online programme called BiP TIC. BiP TIC does not require therapists specialised in the treatment of tics, but is supported by health professionals more generally trained in talking therapies such as ‘cognitive behaviour therapy’ (CBT). Within the BiP TIC programme parents can also provide support to their children by accessing dedicated pages on the internet. This research aims to make behavioural treatments for tics available to far more young people with the aim of reducing the severity of tics and improving quality of life. We will conduct a randomised controlled trial (RCT) with around 220 children and young people (CYP) aged 9 to 17 with TS.
Half the CYP will receive the BiP TIC remote therapy programme for tics and the other half will receive remote online education with therapist support without focusing on management of tics. Participants will be allocated to each group randomly and will have access to the online content for the duration of the trial. Findings will help show if this online remote therapy for tics is effective and should be rolled-out in the NHS. We have a track record of successful clinical trials and have expertise in online interventions, mental health in young people and treatment of TS. We have involved young people with TS and their parents in the development of this research and are collaborating with the national charity Tourettes Action.
This project is a collaboration between the University of Nottingham, NIHR MindTech MedTech Co-operative, Great Ormond Street Hospital, University College London, and the Karolinska Institute in Sweden. For more information about the study, please visit the Website