Communicating uncertainty in Clinically Isolated Syndrome
Research type
Research Study
Full title
Exploring preferences for the communication of uncertainty in Clinically Isolated Syndrome
IRAS ID
320027
Contact name
Eirini Kontou
Contact email
Sponsor organisation
University of Nottingham
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 0 months, 29 days
Research summary
A diagnosis of Clinically Isolated Syndrome (CIS) is given when someone has first
symptoms of Multiple Sclerosis, a lifelong disease that affects the brain and spinal cord. Someone with CIS may go on to have more symptoms in the future and receive a diagnosis of MS, or they may never have any symptoms again. Therefore, there is a lot of uncertainty in CIS. This uncertainty can be difficult for people with CIS to manage and cope with. Some research suggests that the way clinicians communicate uncertainty could help people to cope better with the diagnosis, but very little research has been done in the area.This study aims to find out people’s preferences for how uncertainty is
communicated in CIS. We will be asking people with experience of CIS and their family members/significant others (e.g., friend, partner) to comment on recordings of role plays between a patient and neurologist. People will have the option of completing these discussions either in a group or individually. People will discuss what they liked and disliked about the way uncertainty was communicated in the role plays and draw on their own experiences of being diagnosed with CIS. People involved in the study will either go to one group or one individual interview that will last around two hours. The discussions will be recorded and analysed by the researcher and will take place at the University of Nottingham or virtually.People will be included in the study if they have a current CIS diagnosis or previously
had a CIS diagnosis within the past five years. Significant others of people with experience of CIS will also be included. People in the study will be found through neurology clinics in Nottingham and the Nottingham Multiple Sclerosis Research Group. The study will be sponsored by the University of Nottingham.REC name
North of Scotland Research Ethics Committee 1
REC reference
23/NS/0020
Date of REC Opinion
10 Feb 2023
REC opinion
Favourable Opinion