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DiAMoND Study Phase 3: Testing of a decision aid for those considering gastrostomy

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    DiAMoND Study Phase 3: Testing of a decision aid for those considering gastrostomy

    Testing of the 'Gastrostomy tube – Is it for me?' decision aid within clinical practice - assessing whether it is acceptable, practical, and beneficial for people with MND, carers and healthcare professionals

    More than 80% of individuals with MND develop problems with swallowing. This can make it harder to eat and drink, with the potential to cause significant distress, choking risk and weight loss. One way of managing this is to have a gastrostomy tube fitted into the stomach, known as a percutaneous endoscopic gastrostomy (PEG) or a radiologically inserted gastrostomy (RIG). Food, drink and some 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 up and more research is needed in this area to be sure of the best advice for people with MND. 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.

    To support people with MND making this decision, a web-based patient decision aid (DA) called 'Gastrostomy tube – Is it for me?' has been developed. DAs are designed to support complex decisions that need more detailed information and more careful consideration.

    This study, being conducted by the University of Southampton, will test the feasibility of using 'Gastrostomy tube – Is it for me?' within clinical practice by assessing whether it is acceptable, practical, and beneficial for people with MND, their carers and the healthcare professionals working with them.

    What does taking part involve?

    After providing consent within the decision aid, participants will be asked to provide some information about themselves, and complete the feedback questionnaire/s.
    Healthcare professional participants will also be invited to take part in a focus group to explore how to effectively disseminate and integrate the decision aid into clinical practice.

    The participant information sheet, available to view in the decision aid, provides further information.

    Who can take part?
    • People living with MND: individuals with a confirmed diagnosis of MND
    • Carers: any individual >18 years, who looks after a family member, partner or friend with MND who is considering gastrostomy placement. The care they provide is unpaid, and they have face-to-face contact with the person with MND at least 3 times a week.’ (currently or within the last year)
    • Healthcare professionals working with individuals with MND, involved in the gastrostomy decision making process or supporting patients through this (CCT).
    All participants must have access to the internet and able to complete online forms and questionnaires (or have someone who is able to support them to complete this). Participants can be UK-wide (remote).

    How can I take part?

    To find out more or take part in the study please click here: Take part in this study

    If you have any questions, contact the DiAMoND study team at [email protected] or visit the MND Association website: http s://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/diamond/
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    Er without one starving to death is inevitable? Not to mention meds?
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Looks a useful decision tool👍
      Last edited by LindaB; 7 August 2021, 06:43.
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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        #4
        I took the decision not to have one fitted.

        I have survived over 10 years now without one. I am very careful how I eat but the point is that I survived.

        THIS AGAIN POINTS TO THE IMPORTANCE OF KNOWING WHICH TYPE OF MND WE HAVE THROUGH A WHOLE GENOME TEST.
        Copyright Graham

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