Recipient organisationNIHR University College London Hospitals Biomedical Research Centre
NIHR supportRecorded as supported by this research centre
PeriodMar 2025 — Aug 2026
In plain English
AI plain-English summary
People living with motor neuron disease (MND) are making difficult decisions about drug treatments that may extend life but also add burdens from side effects and frequent clinic visits, and this study will interview them to understand what matters most in those choices. The problem is that MND is incurable and typically fatal within two to four years of diagnosis. While many new disease-modifying drugs are entering clinical trials, there is little systematic evidence on how people with MND weigh the trade-offs between potential survival benefits and the real-world costs of treatment—fatigue, distress, and the disruption of regular hospital appointments. Without this knowledge, clinicians cannot tailor care to individual preferences. If this research succeeds, it will produce a concise guidance document for clinicians and a lay summary for people with MND. The practical impact is modest but direct: better conversations between patients and their care teams, and care plans that reflect what patients actually value, rather than what clinicians assume they value. The study is not developing a new treatment or cure—it is gathering qualitative data from 20 participants through semi-structured interviews to ensure that patient voices shape how existing and future drugs are offered.
View original technical description
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.
Plain English summaries and category classifications on this site are generated by AI and may not perfectly reflect the original research.
Is something wrong? Let us know