Management of choking in people living with Motor Neuron Disease
Research type
Research Study
Full title
Management of choking in people living with Motor Neuron Disease: a co-designed, evidence-based clinical algorithm
IRAS ID
360194
Contact name
Sara Mazzucco
Contact email
Sponsor organisation
Great Western Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
MND affects muscles in the throat and chest, causing progressive difficulties in breathing, swallowing and coughing. People living with MND (plwMND) struggle to keep their airways clear of food, liquids and saliva; these are more likely to go into the airways, causing obstruction or reflex narrowing. As a result, ‘choking’ (breathing impediment due to airway blockage) is more frequent, severe, and prolonged in plwMND than in the general population, and can happen outside meals. It is distressing for patients and carers, and can lead to emergency calls, hospital admissions and unplanned medical procedures. Knowing what to do during choking is important for patients, carers and healthcare professionals. However, there is no guidance developed specifically around the needs of plwMND. The National Institute for Health and Care Excellence and the MND Association suggest using medications for breathlessness and anxiety, but details on which medication, dose, form, and timing of administration are missing. In this project, we will: 1) review and summarise the best scientific evidence on management of choking in MND, comparing existing treatments and highlighting gaps in our knowledge; 2) interview plwMND, their carers and healthcare professionals involved in MND care, to understand their experiences, needs and views on management of choking; 3) involve them in the development of co-designed guidance for treatment of choking; and 4) disseminate the guidance to the MND community and MND healthcare professionals.
REC name
London - Dulwich Research Ethics Committee
REC reference
25/PR/1142
Date of REC Opinion
21 Oct 2025
REC opinion
Further Information Favourable Opinion