CAS MND

CARE MND: Harnessing technology to support assessment and management of Cough And Secretion problems in people with MND: A mixed methods study to explore barriers and facilitators to support co-design of telemedicine tool

UK Chief Investigator

Charlotte Massey

Research summary

Background: Motor neuron disease (MND) or amyotrophic lateral sclerosis (ALS), is a progressive, neurodegenerative disease of the upper and lower motor neurons, causing weakness and wasting of muscles controlling limb movement, speech, swallowing and breathing. Death usually occurs in 2-4 years and the most common cause of death is respiratory failure. Saliva, secretion and cough problems are common in people with MND, impacting quality of life, ability to implement respiratory interventions such as non-invasive ventilation (NIV) and causing a risk of chest infections. Recent studies have highlighted the importance of managing the upper airway and lower airway in conjunction to improve outcomes however management of these issues remains challenging for many health care professionals and symptoms have a big impact on patient quality of life. 

Methods:  This mixed-methods study will evaluate people with MND and their caregivers who have or support the management of cough and secretion issues, to identify the barriers and facilitators. Semi structured interviews will be conducted with people with MND and their caregivers to understand their perspective. Themes from this will be analysed and support the co-design of a tool harnessing technology to support management of these issues. 

Results:  Each data set will be analysed separately in detail using techniques such as thematic analysis. All data sets will then be analysed together in a process of triangulation to explore the findings from each component of the study. 

Current status

Open to recruitment

Recruitment target

30 participants

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

Recruitment groups

• People living with MND

• Caregivers of people living with MND

• Healthcare professionals

Locations

• Royal Hallamshire Hospital, Sheffield (Principal Investigator: Esther Hobson)

• University College London Hospital (Principal Investigator: Jan Clarke)

Information about study sites

Contact details

Sarah Birchall, email: sarah.birchall4@nhs.net

Key dates

Recruitment open date: 10th January 2024

Planned recruitment end date: 30th September 2025

Inclusion / exclusion criteria

Inclusion criteria for healthcare professions:

1. Be a qualified healthcare professional

2. Have been involved in the care of people with MND with cough and secretion issues within the last 2 years

3. Able to provide informed consent in English 

Inclusion criteria for people with MND and their carers/family:

1. Able to provide informed consent in English

2. Aged 18 and over

3. Has confirmed diagnosis of MND and has cough and secretion issues OR  Is a carer for someone with a confirmed diagnosis of MND and suffers with cough and secretion issues

4. Able to participate in a semi-structured interview virtually or face to face 

Exclusion criteria for healthcare professions:

1. Does not care for people with MND with cough and secretion management issues

Exclusion criteria for people with MND and their carers/family:

1. Age < 18

2. Significant cognitive impairment that would render participant unable to respond in a meaningful way in interviews

3. Unable to understand written English and provide consent in English 

Funder

NIHR Academy

Sponsor

Sheffield Teaching Hospitals NHS Foundation Trust

Study design

Observational