Experiences of Individuals with Dysphagia and Neuromuscular Disease
Research type
Research Study
Full title
Understanding the Experiences and Priorities of Individuals Living with Dysphagia due to Neuromuscular Disease.
IRAS ID
270296
Contact name
Christina Smith
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Not applicable, UCL Data Protection Registration; Not applicable, UCL Risk Assessment
Duration of Study in the UK
1 years, 0 months, 29 days
Research summary
This study aims to understand how people living (and caring for people) with neuromuscular disease experience swallowing difficulties (dysphagia). It also aims to understand how swallowing problems impact their live and how much of a priority swallowing assessment and management is to people living with neuromuscular disease, as well as their carers.
We will address the research aims in two ways:
1) Distribution of an electronic survey to patients and carers living with neuromuscular disease and dysphagia; and
2) Running small focus groups for patients and carers living with neuromuscular disease and dysphagia.The survey is designed to collect qualitative and quantitative data from individuals living all over the United Kingdom. Focus groups will provide more detailed qualitative data to deepen our understanding of this population.
The study will support us to identify ways to improve healthcare services for individuals living with neuromuscular disease and dysphagia as well as identify areas for further research.
REC name
Wales REC 6
REC reference
20/WA/0107
Date of REC Opinion
31 Mar 2020
REC opinion
Favourable Opinion