This is a plain English summary of an original research article
There are effective drug and behavioural treatments for tics in children and young people with Tourette syndrome. Although most of the studies included in this review were small with risk of bias, the effects found were moderate to large and likely to be clinically meaningful.
This NIHR funded systematic review and qualitative study found that habit reversal therapy, where people with Tourette’s are taught to replace their tic with a less noticeable alternative, was effective. The drugs with the best balance of benefits and harms – risperidone, clonidine and aripiprazole – are those most commonly used in the UK.
The qualitative review suggested that there is room for improvement in the management of Tourette syndrome in the NHS. Access to care and behavioural treatments are patchy, there are long delays in diagnosis, care pathways are often absent, and there is a lack of integration in the commissioning and provision of services. This comprehensive study offers suggestions on how care could be improved.
Why was this study needed?
Tourette syndrome is a neurological condition characterised by a combination of involuntary noises and movements called tics. It usually starts during childhood and continues into adulthood. Vocal tics are sounds and motor tics are body movements. Children and adolescents with Tourette syndrome may also have one or more other behavioural conditions such as obsessive-compulsive disorder, autistic spectrum disorder or attention deficit hyperactivity disorder.
Tourette syndrome is common, affecting about one in every 100 children and young people. Treatment can be with drugs and/or behavioural therapies. Service provision in the NHS is variable, depending on the configuration of local services.
This study reviewed the effectiveness of treatments for tics and the experience of young people with Tourette’s and their parents when being cared for in the NHS.
What did this study do?
The study had two main components: 1) a systematic review of tic treatment trials; and 2) a qualitative study of patient and parent experience.
Systematic review: 70 studies, including randomised controlled trials and controlled before-and-after studies, of drug and behavioural interventions in children and young people (up to 18 years of age) with Tourette syndrome or chronic tic disorder were included. Meta-analyses were performed where possible. Most of the studies were relatively small and the quality of the evidence on the whole was low.
Qualitative study: Four qualitative studies were reviewed. In addition 295 parents or carers contributed to a survey via the Tourette’s Action website, and 40 people with Tourette syndrome, recruited via a national survey and specialist UK Tourette’s clinics, were interviewed.
What did it find?
- Antipsychotic and noradrenergic drugs were both effective in treating tics in children and young people with Tourette syndrome. The effect sizes were moderate to large, and probably clinically meaningful. Compared to placebo antipsychotic drugs reduced tics (standardised mean difference [SMD] -0.74, 95% confidence interval [CI] -1.08 to -0.41) amongst 75 people studied. Noradrenergic drugs reduced tics (SMD -0.72, 95% CI -1.03 to -0.40) amongst 164 people studied.
- There is no evidence that the effectiveness of the drugs is modified by either tic severity or other existing illness. The authors judged that the balance of benefits and harms favoured the most commonly used medications: antipsychotics risperidone and aripiprazole, and the noradrenergic drug clonidine. In surveys, parents perceived aripiprazole as being the most helpful drug with the least troublesome adverse effects.
- Habit reversal therapy was similarly effective (SMD -0.64, 95% CI -0.99 to -0.29) amongst 133 people studied. This behavioural therapy teaches people to be aware of tic urges and replace the tic with another, less noticeable response. There is some preliminary evidence that delivering the therapy via video consultation may be as effective as face-to-face.
- Key themes that emerged from the qualitative review were: difficulties in accessing specialist care and behavioural interventions; delay in diagnosis; importance of anxiety and emotional symptoms; lack of provision of information to schools, and inadequate information regarding medication and adverse effects.
What does current guidance say on this issue?
NICE have not published guidelines on Tourette syndrome. Many of the treatments are used off-label, meaning that tics are not their licensed indication.
The European clinical guidelines for Tourette syndrome recommend behavioural therapy as the first-line treatment option for most people, with habit reversal training being the recommended first choice behavioural therapy. This may be combined with drug treatment. Risperidone is recommended as first-line drug treatment, though they note that its use is limited by adverse reactions. The guidelines suggest that aripiprazole is useful in treatment-resistant cases, and that clonidine can be given especially when coexisting attention deficit hyperactivity disorder is present.
What are the implications?
This was a very comprehensive review, covering a wide range of interventions. There are some limitations. The number and quality of clinical trials was low, and the qualitative study cannot provide reliable evidence of benefit or lack of harm because there was no dosing information and no control group.
Nevertheless, the review’s findings contain some important messages.
First, access to behavioural interventions is limited. The survey found that only 25% of young people had a behavioural intervention. Future work could look into widening access through the use of mobile phone apps and video consultation. In practice, it appears that the primary intervention from paediatricians is often a trial of medication for tics – the choice of drug used is highly variable.
Second, there is a long delay in diagnosis and access to treatment. The average length of delay in diagnosis of Tourette syndrome was three years from symptom onset.
Third, clear care pathways are often absent. Care pathways for suspected Tourette’s need to be established to improve access to assessment and diagnosis.
Fourth, there is a lack of integration in the commissioning and provision of physical and mental health services. The authors suggest that Local Child and Adolescent Mental Health Services should provide assessment and treatment, and offer referral and support for patients who need to access specialist centres.
Citation and Funding
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.
This project was funded by the National Institute for Health Research HTA programme (project number 10/142/01).
NHS Choices. Tourette’s syndrome. London: NHS Choices; 2015.
Roessner V, Plessen KJ, Rothenberger A, et al. European clinical guidelines for Tourette syndrome and other tic disorders. Part II: pharmacological treatment. Eur Child Adolesc Psychiatry. 2011;20(4):173-96.
Verdellen C, van de Griendt J, Hartmann A, et al. European clinical guidelines for Tourette syndrome and other tic disorders. Part III: behavioural and psychosocial interventions. Eur Child Adolesc Psychiatry. 2011;20(4):197-207.
Produced by the University of Southampton and Bazian on behalf of NIHR through the NIHR Dissemination Centre