Take part in ACTMuS quality of life study

Published Date
28/09/2017
Author
Joel Rackham
Category
Care & Support

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

It is important to find ways for better managing the condition and understanding factors that influence quality of life for people living with muscle-wasting conditions. Each individual’s quality of life is affected in different ways even if the type and 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 a new psychological approach called 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.

Taking part

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
  • Facioscapulohumoral muscular dystrophy
  • Becker muscular dystrophy

You will also need have access to a computer with Internet to receive study materials such as questionnaires remotely.

For more information please read the information sheet.

If you are interested in taking part in the study please contact Victoria Edwards, the Research Assistant for ACTMuS, on victoria.1.edwards@kcl.ac.uk or by telephone on 020 7848 8462. Victoria 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.

Please feel free to get in touch even if you have already been in contact with a member of the team but have not previously participated.

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