The Empower Study
Research type
Research Study
Full title
The Empower Study: Developing Advance Care Planning Resources for People Severely Affected by Multiple Sclerosis, and their Families
IRAS ID
258274
Contact name
Jonathan Koffman
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Living with progressive illnesses like multiple sclerosis (MS) can bring with it great uncertainty. This can be highly distressing for people with MS (PwMS), and their families. Planning for the future in light of clinical uncertainty, particularly for a time when individuals can no longer decide for themselves has been shown to have benefits.
One approach to encourage planning and decision making is referred to 'advance care planning' (ACP) and is designed to enable an individual to maintain control over important events in their life. Evidence shows ACP can lead to care being aligned to a person’s wishes, reduce the possibility of them receiving unnecessary and unhelpful medical treatment, improves the quality of their life and quality of life near to their death, decrease hospital admissions, and improves the chances of them dying in their preferred location. ACP also helps families.
We want to examine to what extent ACP is valuable to PwMS and their families. We will review relevant literature, interview PwMS, their families, and conduct ethical discussion groups with health and social care professionals. Finally, using this evidence we will work in concert with PwMS and their families to develop relevant, accessible educational resources to inform and empower others to positively engage in developing their own ACP if that is their preference. This will be evaluated in a future trial.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
19/LO/0292
Date of REC Opinion
8 May 2019
REC opinion
Further Information Favourable Opinion