Acceptance and Commitment Therapy (COMMEND)

Developing a new form of psychological therapy to improve quality of life in people with MND

The purpose of this study is to develop a new form of psychological therapy called Acceptance and Commitment Therapy for improving quality of life in people with MND. We would like to see how helpful this kind of therapy is for improving quality of life in people with MND and what kind of value for money it represents in comparison to the standard treatment that people receive.

What is Acceptance and Commitment Therapy?
Acceptance and Commitment Therapy is a new form of psychological therapy that helps people to learn new ways of handling difficult or distressing thoughts, feelings or sensations so that they can live their life as well as they can with MND, now and in the future. It may be particularly suited to people with MND due to its focus on helping people to learn how to best live their lives, whilst coping with the difficulties they may be experiencing that are out of their control.

What does taking part involve?

You would meet with a researcher who would discuss the study with you and ask you some questions to find out whether you are suitable to take part in it. If you are, then you would be chosen at random to receive either Acceptance and Commitment Therapy plus usual care or usual care alone.

If you are chosen at random to receive Acceptance and Commitment Therapy plus usual care then you will be offered up to 8 one-to-one sessions of this with a trained therapist over 4 months. Each session would last up to 1 hour, would be face-to-face, and would either be in your own home, in the clinic, or via online video conferencing (such as Skype), depending on your preference and therapist availability.

You would work with your therapist to develop an understanding of thoughts, feelings or sensations that might be getting in the way of you living your life as well as you can with MND now or that might get in the way of this in the future. You would learn new ways of living with these thoughts, feelings and sensations, so that you can keep on doing the things that are important and matter to you or being the type of person you want to be, alongside MND. You would be encouraged to try out these new strategies at home.

You would also be invited to complete some questionnaires at baseline (0 months) and 6 months and 9 months later, so that we can see how helpful Acceptance and Commitment Therapy is and what kind of value for money it represents in comparison to standard treatment.

Study location

MND Care Centres: London (Royal London - Barts) and Sheffield.

We are hoping to open for recruitment at King’s College Hospital, Leicestershire, Middlesbrough, Newcastle, Northern Lincolnshire and Goole, Plymouth, Preston, South Wales and UCLH in the near future.

Who can take part?

People who:
• are aged 18 and over, and
• have a diagnosis of Amyotrophic Lateral Sclerosis, Progressive Muscular Atrophy or Primary Lateral Sclerosis, and
• are receiving care from an MND Care Centre or Clinic at Royal London (Barts) or Sheffield Hospitals*

You do not have to be able to talk in order to take part in this study – you can take part if you communicate via a communication aid.

* We are hoping to open for recruitment at King’s College Hospital, Leicestershire, Middlesbrough, Newcastle, Northern Lincolnshire and Goole, Plymouth, Preston, South Wales and UCLH in the near future - please keep an eye on this website for updates.

How do I take part?

If you are interested in taking part in this study and would like to see the Participant Information Sheet, or if you have any questions about it, please email the COMMEND team at dop.commend@ucl.ac.uk.

Funding

The study is being funded by the National Institute for Health Research’s Health Technology Assessment (HTA) Programme (ref: 16/81/01) and the Motor Neurone Disease Association. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

Expiry date: 28 February 2021

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262