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Exploring the Physical and Psychological Experiences of MND Drug Treatments: A Qualitative Exploration from the Perspective of People Living with MND
Exploring the Physical and Psychological Experiences of MND Drug Treatments: A Qualitative Exploration from the Perspective of People Living with MND
UK Chief Investigator
UK Chief Investigator
Alys Griffiths
Research summary
Research summary
Background: Motor Neuron Disease (MND), most commonly in the form of amyotrophic lateral sclerosis (ALS) is a progressive disease caused by neurodegeneration of the motor neurons leading to the weakening of muscles and loss of functionality. MND is currently incurable and death usually occurs within 2-4 years of diagnosis. The treatments for MND can also burden the quality of life of people with MND from the clinical appointments and side effects. This project is focusing on the preferences and factors affecting decision making for disease modifying drug treatments in MND. There is a vast and continuous number entering clinical trials with the aim to eventually find a cure. Identifying people with MNDs preferences for treatment options is vital for delivering the most effective and patient-centric care.
Methods: The study will use semi-structured interviews with people with MND. We will sample to include people with MND with a range of experiences with drug treatments. Potential participants will be identified by their direct clinical (NHS) care team or, if the target recruitment sample of 20 participants is not achieved after 3 months, we will allow participants to self-identify through advertising. Participants will receive a participant information sheet and will be given 1 week to decide whether they would like to participate. Each interview will last around 45-60 minutes although breaks or the opportunity to proceed on a future date will be allowed for reasons such as fatigue or distress. Interviews will be recorded on an electronic recording device and then later transcribed. Thematic analysis will be used to analyse the interview data through coding extracts of the data to generate themes. A final study report and also a lay summary will be produced for pwMND and a concise clinician guidance to increase the accessibility of the results.
Current status
Current status
Active – recruiting
Key dates
Key dates
Actual opening date: 7th January 2025
Planned recruitment end date: 1st August 2026
Recruitment groups
Recruitment groups
Patients with MND
Recruitment target
Recruitment target
20 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
Location
Sheffield
Participant identification centres (PICs):
Calderdale and Huddersfield
Middlesbrough
Norwich
Salford
Swansea
University College London Hospital (UCLH)
Contact details
Contact details
Email Amy Clift amlclift1@sheffield.ac.uk
Inclusion / exclusion criteria
Inclusion / exclusion criteria
Inclusion criteria
Able to provide informed consent and engage in the interview. This will be guided by the individual, the individual’s family or carer and the care team with their understanding of the person’s recall and capacity;
A formal diagnosis of MND;
Able to understand spoken English or be willing to have a family member, carer or translator present to translate;
Aged 18 years and above.
Exclusion criteria
Aged below 18 years
Unable to provide informed consent (either written or verbal.
Unconfirmed/informal diagnosis of MND.
Unwilling to discuss MND drug treatment.
Not able to understand spoken English and provide informed consent in English and not willing to have a family member, carer or translator present to translate.
Funder
Funder
NIHR Academy
Sponsor
Sponsor
University of Sheffield
Study design
Study design
Observational
The Participant Information Sheets are available to view here:
The Participant Information Sheets are available to view here:
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