090  UK multiple sclerosis register: understanding the gaps between patient outpatient experiences and preferences

• Published in: Journal of neurology, neurosurgery and psychiatry Vol. 93; no. 6; p. A128
• Main Authors: Kee, Rachael, Ramsay, Stephen, McKee, Jon, Middleton, Rod, Rodgers, Jeff, Nicholas, Richard, Kennedy, Fiona, Hughes, Stella, McDonnell, Gavin
• Format: Journal Article
• Language: English
• Published: London BMJ Publishing Group Ltd 01.06.2022; BMJ Publishing Group LTD
• Subjects: ABN Abstracts 2021; Multiple sclerosis; Patients; Preferences; United Kingdom > UK
• ISSN: 0022-3050; 1468-330X
• DOI: 10.1136/jnnp-2022-ABN.415

BackgroundProvision of care to patients with Multiple Sclerosis (MS) is complex and an effective multi- disciplinary team (MDT) approach is needed. We surveyed patients’ experiences of ideal care and care actually provided.MethodsWe designed a questionnaire to evaluate service provision and expectation in a nationwide cohort of patients from the UK MS Register with subsequent qualitative and quantitative data analysis.Results2512 patients responded. 58% attend a specialist MS Clinic. Mean age 56 years, median EDSS6.0. Of patients with established diagnoses, 48% had RRMS, 35% SPMS, 12% PPMS, 5% undetermined. The biggest reported gaps at clinic were; physiotherapy (reality vs preference) 13% vs 45%, occupational therapy 6% vs 31% and continence advice 6% vs 29%. Clinical course did not influence expectation in these services. Substantial gaps also existed for counselling and dietetics provision. 18% of patients did not report new symptoms/relapses to any healthcare professional. RRMS patients were less likely to be part of this group and PPMS patients more likely, with no difference between genders.ConclusionsThis study illustrates a gap between MDT service provision and patient preference at MS/neurology clinics throughout the UK, and across all patient subgroups. A concerning number of patients do not report new symptoms to MS services, particularly PPMS patients. Further resources should be directed towards bridging these care gaps for MS patients.rachaelkee@doctors.org.uk|ABN Bursary70