Exploring Experiences and Views of MND Drug Treatments.
Research type
Research Study
Full title
Exploring the Physical and Psychological Experiences of MND Drug Treatments An Qualitative Exploration from the Perspective of People Living with MND.
IRAS ID
337812
Contact name
Alys Griffiths
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
2 years, 0 months, 1 days
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.REC name
Wales REC 4
REC reference
24/WA/0288
Date of REC Opinion
18 Sep 2024
REC opinion
Favourable Opinion