Improving quality of life for people with muscle disease
Project Leader: Prof John Weinman
Location: Kings College London
Condition: All muscle diseases
Duration: 3 years (Starting January 2010)
Total Project Cost: £61,000
Official Title: Changing adverse illness beliefs in those with muscle disease
We know that muscle disease can reduce quality of life but the degree to which it does so is not only related to the severity of the muscle disease. This is because factors such as how the individual views their illness also influence their quality of life. This study is aimed at exploring people's beliefs about their muscle disease and devising ways of changing adverse perceptions with the aim of improving their quality of life.
Contents
- What are the researchers aiming to do?
- How will the outcomes of the research benefit patients?
- Further information and links
What are the researchers aiming to do?
In many chronic diseases it has been noted that while the physical illness can have a big impact on quality of life it is not the only influencing factor. Other factors such as optimism, social support networks and personal perceptions of their illness can also play a large role in determining a person's quality of life. In particular, research has shown that individual differences in patients' views of their illness may mean that even those with similar disease severity may have widely different quality of life.
Perceptions of an illness are formed from information that patients receive from their doctor, family and friends and from the wider media. This may include views of the how the disease will progress over time, its cause and its effects, and how much it can be controlled or cured. The researchers' ongoing work has shown that some people with muscle disease have very negative perceptions about their illness and this can have quite a negative impact on their quality of life, independent of the severity of their muscle disease. This observation is important since perceptions of disease can be changed.
A group of techniques called cognitive behavioural therapy has been shown to be effective in changing peoples' views about their illnesses. The researchers wish to devise a program of education and training based on these techniques that they can apply to people with muscle disease. They will test the program in a small scale trial in order to determine if it has any impact on the quality of life of people with muscle disease.
How will the outcomes of the research benefit patients?
For most forms of muscle disease there are no effective drug treatments. It is important, therefore, to explore other avenues that could improve the quality of life of those living with a muscle disease. An individual's views about their condition can have a direct effect on their quality of life, yet it is possible to modify these views. By devising a cognitive behavioural therapy technique for people with muscle diseases it may be possible to improve quality of life without directly treating the muscle disease. This would be an important addition to the services provided by such clinics since it could have a direct and positive impact on quality of life.
Further information and links
Find out more about specialist muscle clinics.
More about the research we fund.
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