Abstract Details

Title Beyond the Diagnostic Process in MS - Patient Perception of Lumbar Puncture for Clinical Management or Research: Data from the UK MS Register.

Topic Multiple Sclerosis

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

Poster/Presentation
Number 239

Objective

To assess the attitude of people with a known diagnosis of MS to undergoing lumbar puncture for the purpose of either clinical decision-making and/or research studies.

Background The United Kingdom Multiple Sclerosis Register (UKMSR) contains an established, validated cohort of people with MS (PwMS). One of the strengths of UKMSR is the level of responsiveness to questionnaire-based studies. Many PwMS undergo lumbar puncture (LP) as part of the diagnostic process. However, LP is perceived as invasive. Given the expanding utility of cerebrospinal fluid (CSF) biomarkers in clinical practice and research studies, it may become desirable to offer repeat LPs beyond diagnosis.

Design/Methods We designed a questionnaire to evaluate views of PwMS towards aspects of the MS service currently accessing within the UK. This was administered online and over 11,000 PwMS in the UKMSR were invited to complete this. For LP-specific questions, participants indicated willingness for LP on a 10-point Likert scale.

Results Almost 2500 patients completed the questionnaire; around three-quarters were female. Just over half had relapsing remitting MS. The mean age was 55 years, with mean age at diagnosis of 41 years. Median EDSS was 6.0. Of the 1089 participants on disease-modifying treatment, almost 60% indicated feeling neutral-to-agreeable to having LP to evaluate for treatment effectiveness or evidence of relapse. Interestingly, those indicating complete willingness (10/10) represented the largest proportion. Respondents were only slightly less receptive to undergoing LP for research, with just under half still neutral-to-agreeable. We did not observe an influence of age or sex on willingness for LP for either indication.

Conclusions Serial LPs may become standard to assist in evaluating for active MS throughout the disease course. We have found that PwMS on treatment are quite agreeable to considering LP for clinical evaluation. Perhaps understandably, respondents were less willing to have LP solely for research purposes.

Authors/Disclosures
Rebecca Robinson, MRCP, MB BCh BAO PRESENTER	Dr. Robinson has nothing to disclose.
Rachael Kee, MD (Queen's University Belfast)	Dr. Kee has nothing to disclose.
Stephen J. Ramsay, MB (UK) (Royal Victoria Hospital, Belfast Health and Social Care Trust)	Dr. Ramsay has nothing to disclose.
Jon D. McKee, MBBS (Craigavon Hospital)	Dr. McKee 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.
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.
Gavin V. McDonnell, MD (Belfast Trust)	Dr. McDonnell has nothing to disclose.
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.

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