DiAMoND V2.0
Research type
Research Study
Full title
Development and pilot testing of a web-based decision aid for people with motor neurone disease considering a gastrostomy: DiAMoND Study
IRAS ID
260530
Contact name
Sally Wheelwright
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 4 months, 30 days
Research summary
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, chest infections and weight loss. One way of managing this is to have a feeding tube fitted into the stomach, known as a percutaneous endoscopic gastrostomy (PEG) or a radiologically inserted gastrostomy (RIG). 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 to back this assumption. It is not clear whether tube feeding improves nutrition in people with MND, whether it makes them live longer or even if it improves their 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 gastrostomy. A DA presents accurate and reliable information, clearly explains the risks and benefits of with each possible choice and checks understanding. DAs also help people understand what is most important to them, helping them to make decisions which fit their values.
This project will follow international guidelines for developing a DA. We will look at previous research and resources that 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. 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.REC name
West of Scotland REC 5
REC reference
19/WS/0078
Date of REC Opinion
22 May 2019
REC opinion
Favourable Opinion