Online psychology study underway

Published Date
Neil Bennett

An online questionnaire study examining how psychological factors impact on quality of life and mood over time has been started by researchers based at Edinburgh University. The study could help researchers to develop better ways to support people with muscular dystrophy and related muscle conditions.

The study is led by Dr Christopher Graham, who completed his Muscular Dystrophy Campaign-funded PhD last year and is now training to be a clinical psychologist. This study builds on earlier studies which have shown that:

  • the way people think about their muscular dystrophy or muscle condition can be as strongly related to their quality of life as the severity of their condition
  • certain ways of thinking about muscle conditions and muscular dystrophy may be particularly protective for quality of life.

Therefore in this study the researchers want to investigate how psychological factors (including acceptance) affect quality of life and mood over time. They aim to identify the most effective ways of coping with muscle conditions so that they can promote these methods in future interventions.

The present study occurs completely online and can be done from the comfort of your own home. It will require you to complete two questionnaires; the second questionnaire is completed four months after the first one.

The researchers would be grateful of your help.

If you think that you might be interested in taking part then please read the information below.

What is the aim of the study?

This study aims to see how people’s ability to accept their muscle condition and other psychological factors which aren’t related to muscle condition impact on quality of life and mood over time. The researchers want to see if certain ways of thinking protect people from declines in quality of life. This information could help them build effective psychological interventions.

Who can be involved in the study?

The researchers need around 130 people with different kinds of muscle condition to take part. Please see if you meet the below criteria:

You should:

  • have a diagnosis of a muscular dystrophy or other muscle condition
  • have a duration of muscular dystrophy/muscle conditions of greater than six months
  • be aged between 18 and 75 years
  • have access to the internet and a computer on which you can complete the questionnaires.

You should not:

  • have major active illnesses which are unrelated to your muscular dystrophy/muscle condition such as arthritis, COPD, stroke
  • have a diagnosis of myotonic dystrophy
  • have cognitive impairment, such as Alzheimer’s, brain injury etc
  • be unable to read English
  • have a major diagnosed active mental health conditions e.g. psychosis, major depression, obsessive compulsive disorder
  • be currently participating in any treatment intervention studies.

What happens in the study?

You will be asked to complete two questionnaires; both of these questionnaires will be completed online so you can do these from your own home.

The first questionnaire will take about 25 minutes to complete, and the second one will take about 15 minutes to complete. The second questionnaire will be emailed to you four months after you have completed the first questionnaire.

The researchers will ask you to give them your email address at the start of the study; this is so that they can send you the second questionnaire. They will delete your email address immediately once you have completed the second questionnaire or if you decide to drop out – they will not pass your email address onto any other parties or use your email address again for any other reason.

Where does the study take place?

The questionnaires are all completed online; so from the comfort of your own home.

What are the potential benefits of taking part?

The main benefit of taking part is in helping the researchers learn how to better support people with muscle conditions and muscular dystrophy.

Also on a side-note, so that we can let you know what the information you provide means once we have done all the analyses, any results will be made available on the Muscular Dystrophy Campaign website.

If you are interested in taking part then please proceed to the questionnaire website.


Contact Details

If you have any further questions regarding the study then please contact the researchers using the below details:

Dr Christopher Graham
Trainee Clinical Psychologist
University of Edinburgh
Department of Health in Social Sciences
Teviot Place

Dr David Gillanders
Senior Lecturer in Clinical Psychology
University of Edinburgh
Department of Health in Social Sciences
Teviot Place

Independent point of contact:

Professor Heather Wilkinson
Director of Research and Knowledge Exchange – School of Health
22 Buccleuch Place

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