Clinical impact of apathy in MND
Research type
Research Study
Full title
Clinical impact of apathy in motor neurone disease
IRAS ID
214198
Contact name
Sharon Abrahams
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Apathy is the most prevalent and debilitating behavioural symptom for people living with amyotrophic lateral sclerosis (ALS) and is characterised by a lack of motivation in three areas: a) being unmotivated to plan/organise/attend to finishing tasks, b) not thinking of new ideas and c) being indifferent (not caring) to what is going on around them. These types of apathy are assessed by the Dimensional Apathy Scale (DAS), which assesses apathy subtypes independent of physical disability. However, the impact of this behaviour on a person’s everyday living and interaction with their carers/families has not been explored, and is rarely assessed in clinical practice. This study primarily aims to investigate how different types of apathy change over the disease course in ALS. In particular this study will investigate how apathy impacts on quality of life and caregiver burden. The secondary aim of this study is to validate the brief (DAS), for quicker assessment of types of apathy. 60 participants with ALS and 60 of their carers will be invited to take part in the study. The study will last one year and entail repeat visits and interviews with both the people with ALS and a carer/relative/close friend at the ALS patients homes. Each visit will last approximately 1 hour and will take place every three months, totaling a maximum of 4 study visits. Eligible participants should have a diagnosis of ALS and have a carer/relative/close friend who is willing to participate in the study. Recruitment of participants is split between 2 sites, the University of Edinburgh, Scotland and the University of East Anglia, England. This study is funded by MND Scotland, a charity that provides care and support to people affected by MND, as well as funding vital research.
REC name
South East Scotland REC 02
REC reference
17/SS/0094
Date of REC Opinion
10 Aug 2017
REC opinion
Further Information Favourable Opinion