Help to shape an early nutrition webinar for people newly diagnosed with MND
Research suggests that early nutrition support matters in MND, but there is not yet a structured, acceptable, patient centred approach for the period when people are first diagnosed. Most research and resources have been focused on later stages of nutrition in MND care.
This project is being led by a hospital dietitian specialising in MND, who would like to develop a webinar for people living with MND as a first line nutrition support service to help people affected by MND, and their family members or caregivers, after being diagnosed. The webinar could widen access to early nutritional support and advice.
They would like to understand whether newly diagnosed people living with MND would find an early nutrition webinar useful and acceptable. By involving people living with MND and caregivers in shaping the webinar’s timing, format and content, they hope to ensure that the session is practical and supports more consistent nutrition care nationally.
How will this study help people with and affected by MND now and/or in the future?
The webinar will provide simple, evidence-based nutrition advice soon after diagnosis. It is hoped that this format will reach more people, and ensure consistency in nutrition advice, as well as providing practical support for carers who often manage shopping, meal prep, assistance with feeding and other symptom related challenges. In time, this could be scaled up and used in future nutrition care by multiple MND care centres.
Taking Part
What does taking part involve?
Initially, people who take part will be asked to complete a short survey about what nutrition information they want after an MND diagnosis and their preferred webinar format. Following the survey, up to 6 people will be invited to take part in an online meeting to review a draft of the webinar and give feedback. Any changes will then be made to the webinar, and a second online meeting will be carried out to review these changes and agree on the final webinar.
Who can take part?
People living with MND, both newly diagnosed and those who were diagnosed some time ago, and their caregivers.
How can I take part?
If you have been recently diagnosed with MND, you can take part in the study by completing the pre-webinar patient survey. If you were diagnosed with MND more than six months ago, you can complete the retrospective survey to share what information you would have found most helpful when you were first diagnosed.
If you would like to know more about the project, please contact Justyna Reinert, at justyna.reinert@nhs.net
Study location
UK-wide
Funding
NA