Harbinder Sandhu from the University of Warwick updates on work funded by the Dystonia Society to help develop a unique multi-component programme incorporating a cognitive behavioural approach and mindfulness for people living with dystonia.

Warwick Clinical Trials Unit
Living with dystonia can go way beyond its basic symptoms, impacting on all aspects of life including relationships, self-confidence, mood, sleep, mental well-being and overall quality of life. This is why the Dystonia Society funded the University of Warwick Clinical Trials Unit to develop a programme that would specifically target this area of research.

What was the aim of the study?

The aim of the study was to design a programme which specifically targeted the emotional wellbeing of people living with dystonia, using well-tested principles that target areas such as unhelpful thinking and mindfulness. In essence, we were looking to develop and test a bespoke programme to help people with dystonia to manage the ‘non-motor’ symptoms of the condition.

What we did

The research team, with valuable input from members of the West Midlands Dystonia Society Group, designed the programme and overall study. Two people with dystonia became part of the study team. In the programme we aimed to increase the understanding of thought process, emotions and behaviour associated with living with dystonia, and learn strategies to manage the non-physical symptoms using. Mindfulness was used to help make sense of inner feelings and emotions, experiencing the here and now using body scan, awareness on bodily sensations and breathing techniques. Topics such as goal setting, pacing activities, management of flare ups, challenging unhelpful thinking, sleep and dystonia, and mindfulness were all included, and in the evenings creative activities encouraged the group to work together.  We used interviews to explore people’s lives with dystonia and their expectations of the programme before the study, and again after exploring their actual experience. We also asked them to complete some questionnaires exploring their well-being (before, at 1 & 3 months).

Where did we recruit people (participants) to the study from?

Working with the lead neurologist, we recruited patients from the Botulinum Toxin clinics at University Hospitals Coventry and Warwickshire. We chose this particular method to explore how we could recruit from hospitals in future studies and to test the process.

Where was the three day residential programme held and who delivered it?

The programme was held at a conference venue at the University of Warwick. The programme was delivered by a psychologist and an expert in mindfulness, we also had a neurologist who delivered a session on “what dystonia is” and a sleep expert delivered a session on sleep-related issues with dystonia. A half-day refresher session was held at the University of Warwick one month after the programme was completed.

What were the results and what does this mean?

This was a small scale study focused primarily on developing and testing the viability of this sort of programme. Eleven of twelve people (eight female) attended day one (age range 44-77 years) two left during the programme (as they felt the programme was not for them) leaving a total of nine that completed the full three days.

Once the programme was completed the feedback was very positive, with participants feeling it was beneficial and understanding the importance of the topics discussed. In particular they valued the time being spent on explaining what dystonia was and how they could manage the impact of dystonia on their life by using the different strategies such as goal setting. They particularly enjoyed the group element of the course being able to share their own journeys and experiences of living with dystonia. The mindfulness practice was a very successful with all engaging in the practice and discussing the benefits of this. The main benefits were a feeling of reduction in stress, anxiety and just promoting a feeling of general wellbeing. This was all supported with the data collected from the questionnaires.

Next steps

We are now collaborating with the Dystonia Society in the next stage of this research, which is to test different recruitment methods and running of the programme in a trial where people with dystonia are randomly allocated to having the programme or receiving usual care. The long term goal is to test the benefits of the programme and the value of the programme to people with living dystonia.  If we can prove that this sort of programme delivers positive results and can improve quality of life for people with dystonia then we can take the early steps towards seeing if it could one day become a nationally available programme. We will continue to work with members of the West Midlands Dystonia group and members of the Dystonia Society. We will be applying to the National Institute of Health Research for future funding.

Dr Harbinder Sandhu (Assistant Professor, Warwick Clinical Trials Unit, University of Warwick)

Email: harbinder.k.sandhu@warwick.ac.uk

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