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Acceptance and Commitment Therapy for people with motor neuron disease

Date: 05 September 2017

University College London, University of Sheffield and King’s Health Partners clinical academics are part of a clinical trial into the use of Acceptance and Commitment Therapy (ACT) for people with motor neuron disease (MND).

The trial is being funded by the NIHR HTA Programme with support from the MND Association which is contributing up to £80,000 for therapist costs.

MND is a rapidly progressive, life-limiting neurological disease with no known cure. It affects parts of the brain and spinal cord, and results in loss of the ability to move, speak, swallow and breathe. Typical survival is two to three years following symptom onset and current drug treatments only prolong life by two to three months. As there is currently no cure, treatment aims to make the person feel comfortable and compensate for the progressive loss of bodily functions. An under-recognised aspect of the disease is psychological distress. Psychological adjustment appears to be an important prognostic factor for MND and affects a person’s quality of life. Carers too are at an increased risk of depression and stress. Despite this there has been very little research in the area.

Evidence of effective ways of improving psychological health in people with MND is urgently needed. ACT is a form of talking therapy that helps people learn how to live with difficult emotions, thoughts or bodily sensations, while still doing things that really matter to them. Given this focus, it is potentially relevant to all people with MND and their carers, not just those who are currently distressed. It has been shown to be helpful in improving psychological health in other conditions including life-limiting illnesses (e.g. cancer) and disabling long-term conditions. The aims of this clinical trial are to find out if it is possible to adapt ACT for people with MND and to find out whether, along with usual care, it improves psychological health in comparison to usual care alone.

In the first part of the study, people with MND, their carers and healthcare professionals will take part in four workshops to create a manualised intervention based on ACT. Following this, around 28 people with MND will receive up to eight sessions of adapted ACT face-to-face and via online/DVD video (with support from therapists) plus usual care over three months. In the second part of the study, around 188 people with MND will be randomly allocated to receive either up to eight sessions of adapted ACT as described above (subject to change based on the results of the first part of the study) plus usual care, or usual care alone.

The study will take place in multiple sites around the UK, and will begin in December 2017 with results expected in May 2022. The funding has been awarded to Dr Rebecca Gould, Senior Research Associate in the Division of Psychiatry at University College London and Visiting Researcher in the Department of Old Age Psychiatry at the Institute of Psychiatry, Psychology and Neuroscience (IoPPN) at King’s College London. Part of the research will be co-lead by Christopher McDermott (Professor of Translational Neurology) at the University of Sheffield. The research will also be carried out by a team at the IoPPN including Laura Goldstein (Professor of Clinical Neuropsychology), Lance McCracken (Professor of Behavioural Medicine), and Ammar Al-Chalabi (Professor of Neurology and Complex Disease Genetics).

Professor Goldstein said:

“We’re delighted to be contributing to this trial into the use of ACT for MND patients and carers. MND is a devastating illness and when compared to other types of incurable illness and neurodegenerative disease, the rapidly progressive, distressing, life-limiting nature of MND, coupled with its unique physical symptoms and potential impact on cognitive abilities, argues for a tailored approach to potentially improve the psychological health of all patients.

“This kind of high quality research is needed to determine the potential benefits of a tailored psychological intervention for people affected by this condition.”

For more details, please see the project page.

  • Summary:
    A new trial will look at whether Acceptance and Commitment Therapy can help people with motor neuron disease
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    • Dementias and Neurodegeneration - DeNDRoN
    • Neurological Disorders
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