ObjectiveTo evaluate the exchange of information and communication between MS patients and the clinical team regarding decisions around disease modifying therapy (DMT) and MRI results utilising the UKMSR, an established, validated cohort of people with MS.MethodsAn online questionnaire was designed and then disseminated to patients in February 2020.ResultsFrom 2512 responses, 44% were on DMT (86% had RRMS). Of 1089 responses, 60% indicated that the decision to start DMT was made with the clinical team, whilst 13% responded it was “largely my teams’ decision”. Only 117 (~10%) felt they received “too little information”. Overall, 2459 patients had undergone ≥1 MRI, with 70% seeing the images at least once. Almost 90% of patients would be interested in viewing scans at clinic, appearing independent of DMT exposure, although 2/3 of those who were “not interested” were not on DMT.ConclusionsA majority of study participants reported adequate involvement and sharing of information in the decision-making process when starting DMT although a concerning minority appear disengaged. Patients are very interested in viewing MRI scans with a majority having had this opportunity. Not all expressed such an interest however. Patient preference should therefore be duly considered in clinical management.sramsay03@qub.ac.uk|ABN Bursary
BackgroundGiven the expanding utility of cerebrospinal fluid biomarkers in clinical practice and research studies, it may become desirable to offer repeat lumbar puncture (LP) beyond diagnosis. Using the United Kingdom Multiple Sclerosis Register (UKMSR), we assessed patient attitude to LP beyond the diagnostic stage.Design/MethodsAn online questionnaire was designed and over 11,000 patients were invited to partici- pate. For specific questions, participants indicated willingness for LP on a Likert scale (0–10).ResultsAlmost 2500 patients completed the questionnaire and over half had relapsing remitting MS. Of the 1089 participants on disease-modifying treatment, almost 60% indicated feeling neutral-to-agreeable to having LP to evaluate treatment efficacy or evidence of relapse. Interestingly, those indicating complete willingness represented the modal point on the scale. 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.ConclusionsSerial LPs may become informative in evaluating for active MS throughout the disease course. We found that patients on treatment are quite agreeable to considering LP for clinical evaluation. Perhaps understandably, respondents were slightly less willing to have LP solely for research purposes.rrobinson17@qub.ac.uk
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