Mental capacity to make treatment decisions in MND
Research type
Research Study
Full title
Mental capacity to make treatment decisions in people with Motor Neurone Disease
IRAS ID
330573
Contact name
Sharon Abrahams
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
Background: People with motor neurone disease (pwMND) have important decisions to make throughout their illness. One decision highlighted by clinicians and pwMND is whether or not to engage in specific medical treatments which may improve quality of life and prolong survival. Up to 50% of pwMND experience changes in thinking (cognition) and behaviour as a result of damage to the frontal parts of the brain, with 15% suffering from dementia.
These may include problems with planning, organisation and decision making. However, it is currently unknown whether these changes have an impact on a person’s ability or mental capacity to consent to medical treatments.
Aims: To explore if the decision making process involved in consenting to medical treatments is affected in some pwMND and identify which parts of this process are problematic for them.
To identify the types of support which may be needed during the decision making process to enable the person to maintain capacity to make treatment decisions.
To explore whether cognitive and behavioural impairment, anxiety, depression and distress affect decision making.
Methods: 60 pwMND and their study partners will be recruited from the CARE-MND Scottish national register, King's College Hospital and the Motor Neurone Disease Association. 60 people without MND and their study partners will be recruited from University of Edinburgh Psychology Dept volunteer panel and through King's College Hospital. Participants will take part in two semi-structured interviews in which they are asked to imagine a hypothetical situation over a treatment decision, such as consenting to a gastrostomy (feeding tube), this is then repeated but with support. In the second session they will be undertaking cognitive assessment.
The findings will determine if mental capacity to make treatment decisions is affected in some pwMND and the types of support which might be used to help maintain capacity to make those decisions.REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
23/LO/0632
Date of REC Opinion
28 Sep 2023
REC opinion
Further Information Favourable Opinion