Management of choking in people with MND

Management of choking in people living with MND: A co-designed, evidence-based clinical algorithm

UK Chief Investigator

Sara Mazzucco

Research summary

MND affects muscles in the throat and chest, causing progressive difficulties in breathing, swallowing and coughing. People living with MND 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 people living with MND 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 people living with MND. The National Institute for Health and Care Excellence (NICE) 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 people living with MND, 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.

Current status

In set-up

Key dates

Planned opening date: 1st January 2026

Planned recruitment end date: 30th June 2027

Recruitment groups

1. Patients with MND

2. Family carers

3. Health and social care professionals

Recruitment target

58 participants

Click here to see how many participants have been recruited into this study to date (external link to the NIHR public study search)

Location

• Swindon, Principal Investigator: Sara Mazzucco

Contact details

Email Donna Noonan donna.noonan@nhs.net

Inclusion / exclusion criteria

Inclusion criteria

People living with MND:

• Participant has received a formal diagnosis of middle to late stage MND (King's stage 2-4).

• Participant is willing and able to give informed consent for participation in the study

• Participant has experience of episodes of choking

• Participant is aged 18 or over

• Participant lives in England.

Carers/former carers:

• Participant is a carer of a person living with a formal diagnosis of middle to late stage MND

• Participant is willing and able to give informed consent for participation in the study

• Participant has experience of managing episodes of choking

• Participant is aged 18 or over

• Participant lives in England

Healthcare professionals:

• Clinical and support staff who work with MND patients in a hospital or hospice setting

• Participant is willing and able to give informed consent for participation in the study

• Participant has experience of managing episodes of choking

• Participant is aged 18 and over

• Participant works in England

• Willing and able to participate in their personal non-work time

Exclusion criteria

• If all inclusion criteria are met there are no specific exclusion criteria.

Funder

MND Association

Sponsor

Great Western Hospitals NHS Foundation Trust

Study design

Observational