A new study aimed at enhancing quality of life

Published Date
Emilie Shore

We are inviting you to join ACTMuS, a study sponsored by King’s College Hospital and funded by the National Institute of Health Research and Muscular Dystrophy UK. Your participation will help us understand whether a psychological therapy called ACT can improve quality of life for people with muscle conditions.

For most of the muscle-wasting conditions there are currently no efficient treatments available. It is therefore one of the charity’s central goals to find ways for better managing the condition and understanding those factors that influence quality of life for affected individuals and their families.

Muscle-wasting conditions affect people’s quality of life in different ways even if the severity of the condition is the same. This is because some people’s psychological reaction to their diagnosis helps them to adjust better to the difficulties they are facing. Based on these observations researchers from King’s College London think that it might be possible to improve somebody’s quality of life by using a psychological intervention. There are many different types of psychological interventions available but previous research suggests that Acceptance and Commitment Therapy (ACT) might be the best type for somebody that is affected by a muscle wasting condition.

ACT gets its name from one of its core messages which is to accept what is out of your own personal control, while committing to action that will improve your quality of life. ACT has been helpful for people with a range of chronic conditions but it is not known whether it could improve quality of life for people with a muscle-wasting condition. This is what the ACTMuS study aims to find out. Muscular Dystrophy UK is working with the research team and will help to make best use of the study results.

To take part in the study you have to be over 18 years old and have been diagnosed for over six months with one of the following muscle conditions: Inclusion Body Myositis, Limb Girdle Muscular Dystrophy, Facioscapulohumeral Muscular Dystrophy or Becker Muscular Dystrophy. You will also need have access to a computer with Internet to receive study materials such as questionnaires.

If you decide to take part, a member of the study team will talk you through the details of the study, give you an opportunity to ask any questions and check whether the study would be suitable for you. If you are eligible you will be asked to sign a consent form. The researchers will then use a computer to randomly allocate you to either the group that receives standard medical care plus ACT or to the control group that receives standard medical care only. No matter what group you are put into you will be asked to complete some questionnaires online at various points during the study.

If you are interested in taking part in the study and would like to receive further information, please contact Victoria Edwards (victoria.1.edwards@kcl.ac.uk) who is the Research Assistant for ACTMuS.  Please feel free to get in touch even if you have previously been in contact with a member of the team.


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