Some people with MND experience severe swallowing difficulties and it is estimated that over 50% of those with MND are affected by malnutrition and weight loss due to this. These factors are thought to be associated with increased disability and shortened survival, which is why nutrition remains one of the main challenges surrounding disease management. For those with MND who have severe swallowing difficulties, one of the long-term nutritional support options is a gastrostomy (a feeding tube that is inserted directly into the stomach to deliver food, fluids and some medications).
However, making the decision about whether or not to have a gastrostomy can be difficult and a new web-based decision aid has been designed to support people in making this choice. Dr Sally Wheelwright, from Brighton and Sussex Medical School, chatted to us about developing and testing this new tool. This research was funded through a partnership between the MND Association and Marie Curie.
What is a Decision Aid?
Decision aids are designed to assist people to make informed choices about their treatment and care options. They take into account personal preferences and values to ensure that decisions align with these. Decision aids present information, the risks and benefits associated with the treatment/care option and also check that the user has understood the possible outcomes. Decision aids can be paper-based, web-based or created as an application/app.
What was the DiAMoND study?
The DiAMoND study aimed to develop and test a new web-based decision aid called Gastrostomy Tube: Is it for Me? to help people with MND decide whether to have a gastrostomy tube fitted. The study was made up of three different phases.
Phase 1 of the study involved designing the decision aid and deciding what it should include. People with MND, carers and healthcare professionals completed interviews and surveys to help identify and prioritise content for the draft version of the aid.
Phase 2 focused on developing the web-based aid and testing it to see what could be improved. People with MND, carers and healthcare professionals helped to test and improve the draft version through interviews and surveys. This led to the creation of the final version of the web-based aid.
Phase 3, the final phase, evaluated the use of the decision aid. People with MND were able to access the decision aid and complete feedback questionnaires after using it. This helped to determine how useful people found it in helping them to come to a decision about having a gastrostomy.
Why was this research needed?
People with MND are usually offered a gastrostomy tube when they have dysphagia (difficulty swallowing). Dysphagia may cause coughing, aspiration (food going down the wrong way) and longer meal times. This can result in recurrent chest infections, poor nutrition and weight loss. A gastrostomy tube is offered in the hope it will make day to day life easier and perhaps improve survival. Evidence for these benefits is lacking, however, partly because it is an ethically difficult area to research. Also, for various reason, not all people with MND want to have a gastrostomy tube. For many people with MND, making the decision on whether to go ahead with a gastrostomy tube is difficult. This decision aid is designed to help with the decision-making process and help people to make the right choice for them. It does this by providing evidence-based information about the risks and benefits of each option and helping people to work out their own values and preferences.
What did the DiAMoND study find?
The DiAMoND study worked with people living with MND, carers and healthcare professionals to develop Gastrostomy tube – is it for me? and reviewed all the published research. We found there was lots of information people wanted to know to help with their decision making including what the procedure to fit a gastrostomy tube is like, using and caring for the tube and what the alternatives are. Some people wanted very detailed information, whereas others preferred the headline information. As Gastrostomy tube – is it for me? is a web-based patient decision aid, it is able to meet the needs of both these groups of people and it is much more flexible and interactive than a paper-based decision aid.
We used feedback to improve Gastrostomy tube – is it for me? throughout development. Once we had a final version, we made it publicly available and invited users to let us know if it had helped with their decision making. Most people felt highly prepared after using Gastrostomy tube – is it for me? were very satisfied with their decision and would recommend it to others in the same position.
What do these results mean for people with MND?
For anyone with MND who has started thinking about having a gastrostomy tube, Gastrostomy tube – is it for me? is a useful tool to help with the decision-making process alongside discussions with the health care team. The purpose of the decision aid to help people decide if they want to have a gastrostomy tube fitted now. If they decide not to go ahead now, the decision aid can be used to revisit this decision later.
What are the next steps for the decision aid?
The DiAMoND team are working hard to make sure that all health care professionals who work with people with MND are aware of Gastrostomy tube – is it for me? and signpost them to it. The decision aid will be reviewed every three years to make sure the content remains accurate and current.
It is hoped that this new decision aid will offer people with MND, carers and family members better support to enable them to make an informed decision on whether having a gastrostomy is right for them at that point in time.
The decision aid is now available to use and you can click the button below to access it.
This project has been funded through a partnership between the MND Association and Marie Curie. We would like to thank the MND Association Branches and Groups for their generous support of this project. Thank you to Sally for taking the time to share her research with us.