090 UK multiple sclerosis register: understanding the gaps between patient outpatient experiences and preferences
Journal of Neurology, Neurosurgery, and Psychiatry(2022)
摘要
Background Provision 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. Methods We 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. Results 2512 patients responded. 58% attend a specialist MS Clinic. Mean age 56 years, median EDSS 6.0. 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. Conclusions This 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. rachael kee@doctors.org.uk|ABN Bursary 70
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