Abstract Details

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

Topic Multiple Sclerosis

Presentation(s) MS and CNS Inflammatory Disease Posters (7:00 AM-5:00 PM)

Poster/Presentation
Number 230

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.

Authors/Disclosures
Stephen J. Ramsay, MB (UK) (Royal Victoria Hospital, Belfast Health and Social Care Trust) PRESENTER	Dr. Ramsay has nothing to disclose.
Jon D. McKee, MBBS (Craigavon Hospital)	Dr. McKee has nothing to disclose.
Rachael Kee, MD (Queen's University Belfast)	Dr. Kee has nothing to disclose.
Rod Middleton (Data Scienve Building)	The institution of Mr. Middleton has received research support from MS Society.
Jeff Rodgers	Jeff Rodgers has nothing to disclose.
Richard S. Nicholas, FRCP (Imperial College Healthcare Trust)	Dr. Nicholas has nothing to disclose.
Fiona Kennedy, MB, Bch, BAO	Dr. Kennedy has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Kennedy has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Kennedy has received personal compensation in the range of $500-$4,999 for serving as a Meeting chair with Neuraxpharm. Dr. Kennedy has received personal compensation in the range of $500-$4,999 for serving as a Meeting chair with Roche. Dr. Kennedy has received personal compensation in the range of $0-$499 for serving as a Meeting chair with Merck. Dr. Kennedy has received personal compensation in the range of $500-$4,999 for serving as a Conference delegate with Sanofi. Dr. Kennedy has received personal compensation in the range of $500-$4,999 for serving as a Conference delegate with Novartis. Dr. Kennedy has received personal compensation in the range of $500-$4,999 for serving as a Conference delegate with Roche.
Stella E. Hughes, MD	Dr. Hughes has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck. Dr. Hughes has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Hughes has received personal compensation in the range of $500-$4,999 for serving as a Meeting Chair with Merck. Dr. Hughes has received personal compensation in the range of $500-$4,999 for serving as a Speaker 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.
Gavin V. McDonnell, MD (Belfast Trust)	Dr. McDonnell has nothing to disclose.

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