WED 163 Monitoring for outcome assessment and trial recruitment of pwms. Issue 10 (13th September 2018)

• Record Type: Journal Article
• Authors: Kimberley, Allen-Philbey; Ben, Turner; Ozlem, Yildiz; Joela, Mathews; Gavin, Giovannoni; Klaus, Schmierer
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 89:Issue 10(2018)
• Page Start: A20
• Page End: A20
• Publication Date: 2018-09-13
• Subjects: Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp-2018-ABN.72
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: The time constraint of NHS care is difficult to reconcile with the comprehensive neurological assessment required to complete a mandatory EDSS for NHS England funded disease modifying treatment of people with multiple sclerosis (pwMS). We report our experience with parametric data collection in order to (i) inform DMT decisions and (ii) improve characterisation for recruitment of pwMS in clinical trials. Methods: We implemented a battery consisting of the symbol digit modality test, 9-hole-peg-test, 25ft walking test and ABILHAND. pwMS were encouraged to sign up to the MS Register to record patient reported outcomes and 'webEDSS'. Data from the MS Register and BartsMS Database were electronically linked. Results: 334 pwMS at different disease stages (EDSS 0–8.5) have been assessed at least annually. Of these, 64% had a relapsing and 36% a progressive disease course. Clinically meaningful data was obtained and displayed in an engaging portal for interpretation by the clinical team and pwMS. Conclusion: It's feasible to implement multidimensional monitoring of pwMS to benefit (i) management of pwMS and (ii) trial recruitment, particularly for pwMS with EDSS >6.5. Longitudinal follow-up and data analysis is underway. Standardisation of a simple, regularly collected, dataset may improve performance assessment between centres.