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Study aims to improve quality of life for people with Motor Neurone Disease

Published: 17 December 2018
Medical equipment

The Motor Neurone Disease (MND) Association and the terminal illness charity Marie Curie have announced the launch of a jointly-funded study led by the University of Southampton aimed at improving quality of care for people with MND.

The research is part of a second round of  research funding by the two charities, the first three studies having launched in 2017. Led by Dr Sally Wheelwright of Southampton’s School of Health Sciences, it will develop and pilot a web-based decision aid for people with MND considering a gastrostomy.

Many people with MND have problems swallowing. This can make it harder to eat and drink and can lead to weight loss. One way of managing this is to have a feeding tube fitted into the stomach, known as a percutaneous endoscopic gastrostomy (PEG) where food, drink and medicines can be delivered directly into the body through the tube.

Currently it’s not known if being fed in this way improves either nutrition or quality of life for people with MND. Some people have concerns about having a feeding tube fitted and may decide it is not the right choice for them.

The project will develop a web-based decision aid to help people living with MND decide whether to have a PEG tube fitted. It will present accurate and reliable information, clearly explain risks and benefits and check users’ understanding of the material presented. Crucially, it will also help people understand what is most important to them, so supporting personal choice.

The decision aid will be developed with the help of people with MND, carers and clinicians to make sure the information included is relevant, useful and presented in the best way possible.

Dr Wheelwright said “People with motor neurone disease have to make lots of difficult decisions from diagnosis onwards. Quite complicated medical information needs to be evaluated, often in challenging circumstances. I am absolutely delighted to have been awarded this grant because the outcome will hopefully empower people with MND to make a really important decision about how they live their lives.”

Dr Nick Cole, Head of Research Development at the MND Association, said: “The MND Association continues to be dedicated to ensuring quality health and care. I am delighted that we are continuing our partnership with Marie Curie by jointly-funding Dr Wheelwright’s project.”

Dr Sabine Best, Head of Research at Marie Curie, said “Marie Curie funds palliative and end of life care research relevant to people living with terminal illness and their families and friends. We are delighted to continue our partnership with the MND Association to address evidence gaps in the care of people living with MND. We are very pleased to jointly fund this new project that aims to empower patients to make decisions about the use of PEG tubes on the basis of the best available evidence.”

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