Developing a web-based decision aid for gastrostomy in MND (Diamond Study)

To develop and test a web-based decision aid (DA) to help people with MND decide whether to have a gastrostomy tube fitted.

Dr Sally Wheelwright

Lead Investigators: Dr Sally Wheelwright

Lead Institution: University of Southampton

MND Association Funding: £94,576*+

Funding dates: September 2018 - June 2022

* Supported by MND Association Branches and Groups

+ In partnership with Marie Curie

About the project

Gastrostomy is offered to people with MND as a palliative care intervention when weight loss becomes problematic, with the assumption that it is the best method to provide long-term nutritional support. However, there is currently little evidence on increased survival, and the impact on patient and carer quality of life. As the decision about whether to undergo gastrostomy is a difficult one, this project aims to support this decision-making process by developing a patient decision aid.

What does this mean for people living with MND?

This decision aid will help people with MND to make a decision about whether or not to have a gastrostomy fitted. The web-based DA will present accurate and reliable information which clearly explains the risks and benefits associated with each possible choice, ensuring that those with MND are supported in making their decision.

Project code: 963-794