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 group(s)
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)
Contact details
Sarah Birchall, email: sarah.birchall4@nhs.net
Key dates
Recruitment open date: 10th January 2024
Planned recruitment end date: 30th December 2024
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