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Access to behaviour therapies for tic disorders in children is limited. Research found that online behaviour therapy, which is supported by therapists, is both effective and safe. The researchers say it could greatly increase the number of children who are helped.

Tic disorders, such as Tourette Syndrome, can cause distress in a young person’s school and social life. Tics are sudden, rapid movements or sounds that are difficult to control. Tics include blinking, jerking the head, grunting, touching other people or things, and repeating strings of words.

The recommended first treatment is behaviour therapy. The child works with a therapist, face-to-face, to learn to control the tics. However, few children have access to this treatment. A shortage of trained specialists and uneven distribution of services across the country, is limiting its availability.

One way to improve access to treatment is through technology and the internet. The researchers therefore set up a large trial to see whether online delivery of one form of behaviour therapy (called exposure and response prevention) for tics could be safe and effective. The study involved children and their parents. They progressed through self-led activities with remote access to therapist support as needed.

This new online therapy is not yet available on the NHS. The researchers’ next step is to show it can be implemented as part of routine NHS care.

Further information on tics is available on the NHS website.

What’s the issue?

Tic disorders, such as Tourette Syndrome, affect up to one in 100 schoolchildren. Tics are sudden, repetitive movement or sounds. Examples include blinking, jerking the head, grunting, touching other people or things, and repeating strings of words.

Tics can cause distress to young people and interfere with school and in their social lives. Tic disorders are more common in boys. Many children with tics will also have a mental health condition such as attention deficit hyperactivity disorder (ADHD), autism spectrum disorder, (ASD), obsessive compulsive disorder (OCD) or anxiety.

Drugs are used to treat tics, but they often cause side effects, including weight gain and sleepiness. Behaviour therapies are therefore the recommended first treatment.

In behaviour therapies, a child works with a therapist to learn to control the tics. One type of behaviour therapy is called exposure and response prevention (ERP). A therapist helps the child to focus on getting used to the uncomfortable feeling or urge which comes before they tic. Without help, they tic to get rid of this feeling, but the feeling comes back and they tic again. The aim of ERP is for the child to learn to tolerate the uncomfortable feeling – without ticcing – for as long as possible. With practice, the child can resist ticcing for longer.

However, behaviour therapy is rarely available; less than 1 in 5 children with tic disorders has access. This is because of the small number of trained specialists. Only a few places offer face-to-face treatment, meaning long waiting times and people having to travel long distances. One way to improve access to treatment is through technology and the internet.

The current study set out to determine whether therapist-supported online behaviour therapy for tics can help children with tic disorders.

What’s new?

The Online Remote Behavioural Intervention for Tics (ORBIT) study included 224 children, aged 9 to 17 years, with a moderate or severe tic disorder. It was coordinated by two national centres for treating tics, Nottingham, and London, but because the study was carried out online, children from across England took part. The charity, Tourettes Action, provided support.

Children worked through structured online content at their own pace. For half the children, the online package was 10 weeks of ERP behaviour therapy, to help them learn to control tics. The other children received 10 weeks’ education and information about tics; they were not taught to control them.

Both groups had support from their parents, who also received their own online activities. All participants had access to a therapist via online messaging. Therapists did not deliver therapy; their role was to answer questions and encourage children to engage with the online activities.

Tic severity was measured by remote interview at the start of the study, 3 months later (at the end of treatment), and again at 6 months.

Both groups in the study were highly engaged by the online approaches and found them acceptable. There were no related serious side effects in either group.

Overall, children who received ERP were twice as likely show improvement in their tics, than those who received education.

The trial found that:

  • tics were reduced more in the ERP group (16% reduction) than in the education group (6% reduction) at 3 months
  • at 6 months, this improvement was even greater: tics were reduced by 24% in the ERP group and 12% in the education group
  • also at 6 months, more children in the ERP group (47%) had responded to treatment than in the education group (29%)
  • therapist time was low (an average of 2.5 hours in total per child with ERP, compared to 9-10 hours for traditional face-to-face therapy)
  • ERP delivered online could be supported by less highly trained therapists than are required to deliver face-to-face behaviour therapy.

Why is this important?

Face-to-face behaviour therapy is an effective treatment for tic disorders in children, but few have access to it. This study showed that online delivery of ERP behaviour therapy for tics, supported by therapists and parents, is an effective and safe form of treatment. It could greatly increase access to therapy, the researchers say.

Participants in both groups took part in online activities and had access to the same therapist support. This is important because it means the greater improvement in tics with ERP was due to the children learning to control their tics. It was not just due to the therapist’s attention or from knowing they were completing a programme to help them.

This online, therapist-supported, therapy can be done in the child’s home, at their own pace and accessed from wherever they live. Children and their parents only needed a therapist’s help for around 15 mins per week. This is one-quarter of the time that face-to-face therapies require (usually 1 hour per week). The therapists involved in the study also needed less training and experience than if they were delivering face-to-face therapy. Online ERP therapy is therefore likely to offer value for money and enable more children to be treated, the researchers say.

What’s next?

This is the first part of a project that is due to complete in April 2022. The second part is following up the children for an additional year (18 months in total) to see if the benefits are maintained. The researchers are also carrying out a detailed value for money (cost-effectiveness) assessment.

The children in the study were broadly representative of real-world clinical practice. The majority were boys, and many had another condition, such as an anxiety disorder or ADHD, alongside their tic disorder. Most were of White ethnicity, however, and all had moderate to severe tic disorders. This could limit how far these findings can be generalised to other groups; this would benefit from further research.

This online ERP therapy is not currently available on the NHS. The researchers aim to show it can be implemented as part of routine NHS care. A stepped-care approach, for example, could mean that online therapy is offered first, followed by more intensive face-to-face therapy for those who may need it.

The researchers plan to start using this approach in the Nottinghamshire area. This will allow them to assess requirements for wider roll-out, including staff training.

You may be interested to read

This NIHR Alert is based on: Hollis C, and others. Therapist-supported online remote behavioural intervention for tics in children and adolescents in England (ORBIT): a multicentre, parallel group, single-blind, randomised controlled trial. Lancet Psychiatry 2021;8:871-82

ORBIT study: Phase 1 Results video - a video summary of the study.

A review of the effectiveness and patient perspectives of different treatment for tics in children and adolescents by the same authors: Hollis C, and others. 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 Technology Assessment 2016;20:4

Tourettes Action: a charity dedicated to supporting people with Tourette Syndrome and their families.

 

Funding: This research was funded by the NIHR Health Technology Assessment programme.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.


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Comments

Study authors

Trials like this are notoriously difficult to recruit to, but we recruited ahead of time and target. We were struck by how willing and engaged the children and young people were. There was real enthusiasm to participate and very high completion rates. This reflects a substantial unmet need. There was very little access to therapy for tics outside of the trial.

The study is the first to show that online behavioral therapy for tics is an effective and safe form of treatment. Although the published paper did not conduct a full economic evaluation (which should be available late Spring 2022), the limited therapist input suggests it is likely to be cost effective. Thus, online delivered therapy could be an effective public health intervention that could improve access to evidence-based care for children and young people with tics.

Chris Hollis, Professor of Child & Adolescent Psychiatry and Digital Mental Health; and Charlotte Hall, Senior Research Fellow, NIHR MindTech, University of Nottingham 

Tourettes Action

Access to evidence-based behavioural treatments for both children and adults with tics is unacceptably limited, many more could potentially benefit. Advances in methods of delivering therapy that may enable provision to improve is therefore important and Tourettes Action supports all developments to address this unmet need.

Jeremy Stern, Honorary Medical Advisor and Trustee, Tourettes Action  

Research Psychologist 

The research team was incredibly supportive in providing clear and helpful information to the charity Tourettes Action in their endeavours to find potential participants for this research project. I was impressed that throughout the whole process, the team included a panel of young people with Tourette’s Syndrome and their families, who’ve had experience of receiving behavioural therapies for their tics.

This was great collective research with the team providing clinical expertise. They were creative and adaptable in their style of reaching an audience. They created written and web-based materials, along with videos to explain the study and the results. The team integrated itself with the charity, and supporters and potential participants could see that Tourette’s Syndrome was something the research team genuinely supported. They went above and beyond, raised money for people with Tourette’s Syndrome and allocated funds from their budget to support patients’ involvement in the study.

Seonaid Anderson, Research Psychologist, previously Research Manager at Tourettes Action and worked with research team on this project

Researcher

This paper demonstrates that online interventions can be both cost-effective and result in good outcomes for children and young people and their families.

This is the first major study of its kind so further research to replicate the findings would be helpful in increasing the reliability and validity. Hopefully further research will address whether the findings can be generalised to children and young people with more severe tics, or people who are not of British White ethnicity.

I work as an analyst supporting a team of mental health commissioners and this research is something I could discuss with them. The paper could be used to propose a business case to commission the treatment discussed within the study.

Emily Weitzel, Data Analyst, NHS Kent and Medway Clinical Commissioning Group 

Child psychiatrist

The research could have significant impact. It provides valuable information for all of us involved in the design, planning and commissioning of mental health services for children and young people.

It is a well-designed study with checks in place to ensure robust results. There is a balanced appraisal of the results which notes limitations and outlines what needs to be done next to test out the evidence further.

Implementation would be helped by raising awareness of this study – and of the gaps in service provision for this patient group – with commissioners. We need NICE guidance for tic disorders, so that commissioners can purchase the digital programme, including training for staff to deliver it.

Tamsin Marshall, Consultant Child and Adolescent Psychiatrist, Berkshire Healthcare NHS Foundation Trust 

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