Developing a web-based tool for people with MND considering a gastrostomy

“The decision aid will empower individuals with MND to make the best choice for them.” – Dr Sally Wheelwright

Around two thirds of people with MND experience difficulties with swallowing, which can cause significant weight loss. One way to combat this problem is to have a feeding tube inserted into the stomach, in a procedure known as a gastrostomy. This can be very beneficial for some, though it is unknown whether tube feeding improves nutrition in people with MND.

Led by Dr Sally Wheelwright at the University of Southampton, this project aims to develop a web-based decision aid to help people with MND decide whether to undergo gastrostomy. The team will review previous research and conduct interviews with people affected by MND to understand their needs. Their findings will then be used to create content and a web-based decision aid will be developed and tested. By presenting reliable information, explaining the benefits and risks, an individual will be able to make the right decision for them. The aid stands to be an invaluable resource for people with MND, carers, clinicians and researchers.

We are joint funding this healthcare project with Marie Curie. It will cost us £95,000 over three years.

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