ACT in TSC
(Acceptance and Commitment Therapy in Tuberous Sclerosis Complex: An Acceptability and Feasibility Trial)
Information about the TSA-funded trial ACT in TSC and how you can take part
Acceptance and Commitment Therapy in Tuberous Sclerosis Complex (ACT in TSC), a trial being part-funded by the TSA, is recruiting participants at University Hospitals Bristol and Weston.
Having TSC can have a big impact on quality of life for young people and their families. One of the key difficulties is learning to cope with long term problems that might not go away.
The aim of the Acceptance and Commitment Therapy in Tuberous Sclerosis Complex (ACT in TSC) trial is to find out if providing ACT via video-calling (similar to Skype or Facetime) helps to improve physical and mental health for young people who have TSC. ACT is a talking therapy that aims to help patients cope with difficulties in a healthy way and focus on what the individual really values in life.
The findings from this study will improve understanding of how easy it is for children and young adults to access mental health services, and what parts of this specific therapy patients find helpful or unhelpful. This research hopes to demonstrate a clear benefit of providing therapies to children and young people with TSC who are experiencing psychological or emotional distress.
Many people have psychological and social needs as a result of TSC. This study aims to find out if a talking therapy helps.
To take part in this trial, you must be aged 11-24 years old and have a diagnosis of TSC.Â
Doctors at University Hospitals Bristol and Weston want to find out whether Acceptance and Commitment Therapy (ACT), a type of talking therapy, helps reduce distress and improve quality of life. Therapy will be offered via video calls (similar to Skype or Facetime) so that participants will not have to come to the hospital.
The study would start with a conversation to see if it is suitable for you, and some questionnaires to complete. If this study is suitable for you, you will be invited to 12 sessions of therapy either straight away or after a 12 week wait.
If you are interested in taking part in this trial, please speak to your doctor at your NHS TSC clinic or contact Drs Alex Marsh and Jess Broughton at paediatric.neuropsy@uhbw.nhs.uk
Research in the NHS is usually looked at by an independent group called a Research Ethics Committee, to protect participant safety, rights, well-being and dignity. This study has been reviewed and given a favourable opinion by the NHS East of England – Essex Research Ethics Committee.
This study has also been reviewed and approved by the Health Research Authority and the Research & Innovation department of University Hospitals Bristol and Weston NHS Foundation Trust (UHBW). University Hospitals Bristol and Weston NHS Foundation Trust will act as a ‘Sponsor’ (i.e. will be the lead NHS hospital) for this research.
The TSA is funding this research.
For more information about the trial, please contact Dr Sam Amin at sam.amin@uhbw.nhs.net or Drs Alex Marsh and Jess Broughton at paediatric.neuropsy@uhbw.nhs.uk
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