Patients' experience of the multiple sclerosis diagnostic pathway

Abstract

Introduction The 2017 revisions of the McDonald diagnostic criteria promoted the use of lumbar punctures (LPs) to expedite a diagnosis of multiple sclerosis. Objectives To assess patients’ experiences of the multiple sclerosis diagnostic pathway. Methods Feedback from the 113 participants of DECISIve (DiagnosE using the Central veIn SIgn) underwent quantitative and qualitative analyses. Their views were further explored in 17 participant interviews. Results DECISIve participants felt the overall experience of MRI scans was more positive than their LPs (Wilcoxon signed ranks test Z=-4.4, p<0.001). Information given pre-procedure was considered sufficient by 89% for LPs and 96% for MRI scans. Complications were reported by 72 (64%) for their LP and only 9 (8%) for their MRI scan. Many interviewees reported considerable anxiety before their LP, caused by sharing of negative accounts through social networks or online. Even patients who reported tolerating the LP experienced high pain intensity during the procedure, and that there are surprising gaps in the existing patient literature. Conclusions DECISIve participants expressed a unanimous preference for MRI scans over undergoing LPs. However, for those who do require an LP, recommendations to improve patient information materials and consent paperwork will be presented.