Healthcare decision making in ALS patients
Research type
Research Study
Full title
The effects of ALS-associated communication changes on decision-making and interaction with health care professionals (HCPs)
IRAS ID
302489
Contact name
Ammar Al-Chalabi
Contact email
Sponsor organisation
Kings College London
Duration of Study in the UK
3 years, 0 months, 31 days
Research summary
The study is asking how the decision-making process occurs during interactions between the patients with amyotrophic lateral sclerosis (ALS) and the health care professionals (HCPs). The overall aim is to produce an analysis of conversations between patients with ALS and HCPs and to identify the decision-making process through these interactions.
The hypothesis is that the speech and cognitive changes of ALS severely impact the ability to make decisions and communicate with key people. The aim is to determine the main strategies used by the patients to communicate (both verbally and non-verbally) and the major purpose of communication. Additionally, the goal is to determine the major communication goals, changes and problems that are faced by the ALS patients, their partners and healthcare workers.
Video recordings will be made of the patients interacting with their partners and health care professionals (HCPs). A qualitative descriptive ethnographic design utilising the methods of Conversation Analysis will be used. The Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) will be used to assess functional ability.The Edinburgh Cognitive and Behavioural ALS Screen (ECAS) will be used to assess cognitive and behavioural changes in ALS patients.
The Hospital Anxiety and Depression Scale (HADS) will be used to measure the patients’ symptoms of anxiety and depression.
The study will be conducted at King's College Hospital within a period of 12 months.REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
22/YH/0154
Date of REC Opinion
23 Aug 2022
REC opinion
Further Information Favourable Opinion