A mixed methods investigation of quality of life in patients with MND
Research type
Research Study
Full title
A mixed methods investigation of quality of life in patients with motor neurone disease (MND) and their carers
IRAS ID
195333
Contact name
Hannah Barraclough
Contact email
Sponsor organisation
Teeside University
Clinicaltrials.gov Identifier
researchregistry2168, http://www.researchregistry.com/
Duration of Study in the UK
1 years, 0 months, 31 days
Research summary
Motor neurone disease (MND) is a rapidly progressive ultimately fatal neurodegenerative disease that results in degeneration of the motor neurons in the brain and spinal cord. This causes progressive physical impairment and decline in function of breathing, swallowing and communication.
Quality of life (QOL) for people with MND can be drastically affected by disease progression, mood and coping. A systematic review of literature published between 1966-2006 shows the prevalence of depression in MND patients varies from 11-50% whilst rates of anxiety vary from 11-26% (McLeod & Clarke, 2007). Mood is believed to have a role in increased mortality in MND patients thus making it a critical consideration for MND services.
A person’s ability to cope with MND may be of utmost importance to their overall QOL. Coping is any attempt to reduce the impact of a perceived or actual stressor which can be either positive or negative. Understanding coping in MND patients and carers is important for appropriate psychological interventions to encourage adaptive coping methods.
An individual’s coping ability and mood can largely be affected by the support systems a person has around them. Someone who has a supportive family is more likely to adjust and cope positively with MND than someone who has little support. Consequently families and carers play an important role in the lives of people with MND.
Whilst the majority of research to date has examined QOL, mood and coping separately, there is little in the way of research that examines the relationship of these variables to one another. Moreover, studies tend to be restricted to samples of MND patients, or MND carers, but rarely both. Consequently, the current study aims to explore the combined relationship between QOL, coping and mood in both those who have MND, and those who care for someone with this condition.
REC name
Wales REC 6
REC reference
17/WA/0224
Date of REC Opinion
2 Aug 2017
REC opinion
Further Information Favourable Opinion