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The University of Southampton
Macmillan Survivorship Research Group

Marie Curie and Motor Neurone Disease Association DiAMoND Study

Development and pilot testing of a web-based decision aid for people with motor neurone disease considering a gastrostomy feeding tube


Funder
: Marie Curie and Motor Neurone Disease Association DiAMoND Study

Chief Investigator: Dr Sally Wheelwright

Lead Researcher: Rose Evill


More than 80% of individuals with motor neurone disease (MND) develop problems with swallowing. This can make it harder to eat and drink, with the potential to cause significant distress, choking risk and weight loss. One way of managing this is to have a feeding tube fitted into the stomach through a procedure known as a gastrostomy. Food, drink and medicines can be delivered directly into the body through the tube.

Although this seems a good solution, there is very little evidence around whether tube feeding improves nutrition in people with MND, whether it lengthens life or if it improves quality of life. Some people have concerns about having a feeding tube fitted or what it’s like to live with one and may decide it is not the right choice for them.

The aim of this project it to develop a web-based decision aid (DA) to help people with MND decide whether to have a feeding tube fitted. A DA presents accurate and reliable information, clearly explains the risks and benefits associated with each possible choice and checks understanding. As well as educating, DAs also help people understand what is most important to them, which supports people to make decisions which fit their values. A web-based DA gives people control about the information they are ready to see, allows them to revisit information and can include links to other reliable sources of information.

This project will follow internationally agreed guidelines for developing a DA. We will look at previous research and resources which are already available. Crucially, we will interview people with MND, carers and healthcare professionals to make sure we include the right information and present it in the best way possible. The DA will be improved by asking people with MND, carers and healthcare professionals to review it after each round of changes. We will then test the DA across the country to make sure that patients, carers and clinicians find it helpful and easy to use. We will also check that patients think it has helped them come to the right decision for them.

As the DA will be web-based, the final version can be shared widely, ensuring that it reaches the people and organisations who need it most.


If you would like further information on this research please contact the research team on 023 8059 7939 or email diamond@soton.ac.uk

Follow us on Twitter: @DiAMoNDstudy_

 

 

 

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