Two technologies recommended for people with chronic tic disorders and Tourette syndrome
Draft guidance issued for consultation recommends two technologies to help people manage their condition.
Two technologies that could reduce the severity of the symptoms of chronic tic disorders and Tourette syndrome have been recommended for use in draft guidance from NICE.
It is the first time a NICE committee has recommended digital therapies for these conditions which developers believe could also improve the user’s ability to go about their everyday life.
We surveyed people with chronic tic disorders and Tourette syndrome, and their parents or carers, about their experiences and received 1,508 responses. In response some said that for most people it can take a long time to get a diagnosis (most people need to wait at least 6 months to 2 years). The acceptance of using digital technologies varied between people who completed the survey but it highlighted present treatment options are limited.
Tics are fast, repetitive muscle movements that result in difficult to control body movements or sounds. Examples of tics might include blinking, grimacing, head jerking, head banging, finger clicking, coughing, grunting, sneezing, repeating a sound or phrase (in approximately 10% of people this can be something offensive, such as swearing). When both motor and vocal tics are present for more than 1 year, this is commonly known as Tourette syndrome.
We have launched a consultation on the recommendations reached by the independent committee on recommendations to allow the use of Online Remote Behavioural Intervention for Tics (ORBIT) and Neupulse (once appropriately regulated) by NHS patients for the next three years. Further evidence will be generated during this time on the technology’s long-term clinical effectiveness, how they affect the person’s quality of life, and which patients benefit most from using them.
ORBIT is accessed via a web browser and is an online guided self-help intervention which uses videos, animations and interactive scripts to help children and young people aged 9 to 17 years. It is supported by an online therapist across a 10-week programme to deliver a form of behavioural therapy called an exposure with response-prevention intervention, which involves practicing confronting the thoughts, images, objects, and situations that makes a person anxious and provokes their tic.
Neupulse is a wearable wrist-worn device linked to a mobile phone app, used to treat those over the age of 12. The device delivers low-intensity electrical pulses to the median nerve to reduce tic frequency and severity. Users are supported by written and video-based guidance and a technical support helpline.
Each technology would only be offered after clinical assessment with a GP. The first line treatment option will remain as psychoeducation, which combines the elements of cognitive-behaviour therapy and education, before offering one of the two technologies could be offered.
It is estimated that Tourette syndrome affects one school child in every hundred, with more than 300,000 children and adults in the UK living with the condition. Experts estimate less than 20% of children and young people with tic disorders currently have access to behavioural therapies.
Our committee heard that diagnosis, treatment and support for people with chronic tic disorders and Tourette syndrome can be variable depending on which part of the country they live in. For many it can take several months to receive a diagnosis, and our patient survey has highlighted that treatment options can be limited. Our committee’s recommendation of these two technologies could increase treatment options and could allow more convenient treatment for people wherever they live be that urban or rural given the inconsistency in access.
Neupulse can be used once it has appropriate regulatory approval – it is currently working towards CE and UKCA marking (expected 2026) – and meets the standards within NHS England’s Digital Technology Assessment Criteria (DTAC).
After the consultation, responses will be considered by the committee who may then alter their recommendations before final guidance is published on our website.
A consultation on the draft recommendations has begun and comments can be submitted until Tuesday 17 December 2024.