UK Multiple Sclerosis Register: Understanding the Gaps between Patient Experience and Patient Preference within outpatient clinics in the UK

Objective: NA Background: Provision of care to patients with Multiple Sclerosis (MS) is complex, multi-faceted, and based on an effective multidisciplinary approach. It is crucial to map our service provision using direction provided from patient experiences and expectations, and the gaps that may exist between the two. Design/Methods: We designed a questionnaire to evaluate service provision and expectation in a nationwide cohort of patients from the UK MS Register. Qualitative and quantitative methods were used for data analysis. Results: Overall 2512 patients responded, mean age 56, median EDSS 6.0. Of patients with established diagnoses, 48% had Relapsing remitting (RRMS), 35% Secondary Progressive (SPMS), and 12% Primary progressive MS (PPMS). Fifty-eight percent attended a specialist MS clinic. When comparing which services patients accessed vs those they would value, the greatest gaps were regarding physiotherapy (PT, 13% vs 45%), occupational therapy (OT, 6% vs 31%) and continence advice (6% vs 29%). Clinical course did not significantly influence desire to see any of these, nor did gender affect preference for continence input. Significant gaps also exist for psychology, counselling and dietetics provision. Eighteen percent of patients do not report new symptoms/relapse to any healthcare professional. Those with RRMS were less likely to be part of this group, and patients with PPMS more likely, with no significant difference conferred by gender. Conclusions: This study illustrates a gap between MDT service provision and MS patient preference at MS/neurology clinics throughout the UK, with particular emphasis on PT, OT and continence input. This gap applies to all subgroups of MS patients. A concerning number of patients do not report relapses, progression or new symptoms to MS services, with PPMS being a particular driving factor for this. Further resources should be directed towards bridging these care gaps for MS patients. Disclosure: Stephen Ramsay has nothing to disclose. Dr. McKee has nothing to disclose. Dr. Kee has nothing to disclose. Mr. Middleton has nothing to disclose. Jeff Rodgers has nothing to disclose. Dr. Nicholas has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Nicholas has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Dr. Nicholas has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Kennedy has nothing to disclose. Dr. Hughes has received personal compensation in the range of $500-$4,999 for serving as a Meeting Chair with Merck Serono. Dr. Hughes has received personal compensation in the range of $500-$4,999 for serving as a Teacher for Nurses’ meeting with Biogen. Dr. Hughes has received personal compensation in the range of $500-$4,999 for serving as a Meeting Chair with Roche. Dr. Hughes has received personal compensation in the range of $500-$4,999 for serving as a Conference Delegate with Roche. Dr. McDonnell has nothing to disclose.