Swallowing Difficulties and Neuromuscular Disease

Understanding the experiences and priorities of individuals (and carers) living with swallowing difficulties (dysphagia) secondary to neuromuscular disease

The study aims to understand the day-to-day impact and priorities for individuals living with dysphagia as part of their neuromuscular disease, and those caring for these individuals. The outcomes of the study will improve healthcare practices by enabling clinicians and healthcare providers to incorporate views and experiences of service-users into their clinical care and service delivery model. Importantly, study outcomes will also be used to help design future research into dysphagia and neuromuscular disease so that it is relevant and applicable those living with the condition. The survey has been developed and designed by a patient advisory group, made up of 8 core members either living with or caring for individuals with dysphagia and neuromuscular disease.

What does taking part involve?

Participants will be expected to complete an electronic survey consisting mainly of multiple-choice questions but also free-text questions.

The survey is expected to take approximately 15-20 minutes to complete. The survey does not have to be completed in one sitting however partially completed surveys, or surveys where the submit button was not clicked, will not be retained or used in the final analysis. We ask that participants do not take longer than two weeks to complete the survey.

The electronic survey contains a tracking bar so that participants can see how far they have progressed through the survey. Paper versions of the survey are available. There is an option to Email the primary researcher at the end of the survey if participants are interested to hear about more opportunities within this project.

Study location

The research is led by a specialist team based at The National Hospital
for Neurology and Neurosurgery and University College London and
open to those living in the United Kingdom.

For people living with MND & swallowing difficulties:

For people caring for someone with MND & swallowing difficulties:

Who can take part?

• Individuals living with neuromuscular disease (MND) and swallowing difficulties
• Carers of someone living with neuromuscular disease (MND) and swallowing difficulties

Individuals must also be over 18 years of age and must live in the UK.

How can I take part?

To take part, please use the 'Enter the Survey' buttons on this page.

Contact

To find out more, please take a look at the survey websites or contact Jodi Allen via email: neuromuscularswallowing@gmail.com.

Funding

No specific funding. Research time funded by NIHR.

Expiry date: 26 July 2020

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262