Patient Reported Outcome Measures for Neurological Conditions
Research type
Research Study
Full title
Testing the validity and acceptability of a Patient Reported Outcome Measure for people with Neurological Conditions across Wales
IRAS ID
214998
Contact name
Alison Shakeshaft
Contact email
Sponsor organisation
Aneurin Bevan UHB - Medical Directors Office
Clinicaltrials.gov Identifier
Clinicaltrials.gov, NC2016
Duration of Study in the UK
1 years, 7 months, 29 days
Research summary
A Patient Reported Outcome Measure (PROM) is a questionnaire that asks patients for views on their own health and their quality of life. Currently there are generic health related quality of life measures such as the Euro Qol 5d (EQ5D) and specific measures for each neurological condition. There are currently no PROMs in use in the UK that have been validated across a range of neurological conditions that capture the impact of common impairments and limitations in function shared by people with neurological conditions. \n\nWelsh government allocated funding to support implementation of the Neurological conditions delivery plans of which a key focus was to improve rehabilitation and support for people living with neurological conditions. In support of the funding, the Neurological Conditions Implementation Group (NCIG) have set the development of a PROM for neurological conditions as a priority to support the evaluation of the implementation of national delivery plans and the impact of additional funding. The aim is to have a PROM that can be administered, collected and collated on a national level, preferably on the national online platform in development by the National Health Information Service (NWIS). The data will be able to identify inequalities in health and social care provision across Wales, support evaluation of service development and demonstrate change over time.\nA PROM has been developed which represents patients’ views on their health status including their physical and social domains known as PROMIS Plus. This project aims to validate the PROMIS Plus across three neurological conditions (Multiple Sclerosis, Acquired Brain Injury and Parkinsons Disease) against a generic health assessment tool such as the EQ5d or disease specific assessment tools currently used in these conditions. \nOur overall objective is to develop a single PROM that is valid across a range of neurological conditions.\n
REC name
Wales REC 3
REC reference
17/WA/0023
Date of REC Opinion
15 Mar 2017
REC opinion
Further Information Favourable Opinion