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recommended for use in draft guidance from NICE.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.
NICE 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.
NICE has 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 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.
, director of HealthTech at
NICE, said: “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 treat
for people where ever 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.
ENDS
