Measurement on Our Terms (MOT)
Research type
Research Study
Full title
Measurement on Our Terms: exploring the role of patients when developing an upper limb Patient Reported Outcome Measurement for Multiple Sclerosis
IRAS ID
228062
Contact name
Alison Thomson
Contact email
Sponsor organisation
Queen Mary, University of London
Duration of Study in the UK
0 years, 8 months, 0 days
Research summary
Patient Reported Outcome Measures (PROMs) are tools used in clinical practice to assess health, illness and benefits of health care from the patient's perspective. However, the PROMs currently used to measure the impact of Multiple Sclerosis (MS) on a persons upper limb function have been developed with little patient involvement resulting in tools which are not condition specific nor up to date. In other health fields, such as mental health for example, patients have been involved in the entire PROM development process therefore creating more effective measurement tools.
This research seeks to explore how people living with MS can contribute their experiences of living with the chronic condition to the development of a new upper limb PROM.
Participants will be asked to attend three focus groups lasting an average of three hours over a three month period and contribute their experience of how their MS has affected their ability to complete upper limb activities and tasks. They will also be able to discuss their experience of completing PROMs and the role of measurement in their clinical care. Explorative methods, such as focus groups, have been previously used to involve patients in service development and improvement projects, but not in PROM development with people with MS.
The study is funded by the Horne Family Foundation and participants will be recruited from the Barts MS Service at the Barts Health NHS Trust outpatient department.
REC name
London - Stanmore Research Ethics Committee
REC reference
17/LO/1684
Date of REC Opinion
18 Oct 2017
REC opinion
Favourable Opinion