VentMND v1.
Research type
Research Study
Full title
Exploring end of life decision making with patients with Motor Neurone Disease (MND) using home mechanical ventilation: The perspectives of patients and their families.
IRAS ID
294818
Contact name
Eleanor Wilson
Contact email
Sponsor organisation
University of Nottingham
Clinicaltrials.gov Identifier
000, 000
Duration of Study in the UK
2 years, 9 months, 29 days
Research summary
This study will explore patient and family experiences of making decisions about using home ventilation at the end of life. Motor Neurone Disease (MND) causes muscles to gradually weaken. Over time, patients lose their ability to move, speak and breathe. Ventilation, using a close fitting mask or tube in the neck can help support breathing. As their condition worsens, some patients may chose to use ventilation for longer until they cannot breathe without it. They may then wish to decide whether or not they want to keep using ventilation. Stopping, or withdrawing, ventilation at this stage means the patient would quickly die.
We know that withdrawing ventilation is stressful and challenging for health professionals but we do not know what patients or family members think about this. We don't know how they make decisions about staying on or stopping ventilation, what their concerns might be or what the longer-term impact is for families when the patient dies. We think this will be valuable information that can be applied to other conditions where ventilation is used.
We want to talk to patients (approx. 20) with MND who use ventilation, family members (approx. 20) and bereaved family members (approx. 35) so that they can share their experiences. Later in the study, we will bring together health professionals, commissioners, and patients and families to review the findings and decide how we can best use them. These discussion will inform a short, accessible online video to help future patients, families and health professionals to talk about ventilation.REC name
London - Dulwich Research Ethics Committee
REC reference
21/PR/0252
Date of REC Opinion
21 Apr 2021
REC opinion
Further Information Favourable Opinion