While HRQoL at population level is most affected by balance problems, spasticity, and depression in RRMS, the biggest HRQoL losses in PMS are caused by spasticity, paralysis, weakness, and pain. Many symptoms with the largest effects in individuals substantially contribute to the population disease burden.

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Background: Diagnosing multiple sclerosis (MS) early is crucial to avoid future disability. However, potentially preventable delays in the diagnostic cascade from contact with a physician to definite diagnosis still occur and their causes are still unclear. Objective: To identify the possible causes of delays in the diagnostic process. Methods: We analyzed the data of the Swiss MS Registry. With logistic regression, we modeled the time from the first contact to the first consultation (contact-to-evaluation time, ⩽1 month/>1 month) and the evaluation-to-diagnosis time (⩽6 months/>6 months). Potential factors were health system characteristics, sociodemographic variables, first symptoms, and MS type. Results: We included 522 participants. Mostly, general practitioners (67%) were contacted first, without delaying the diagnosis. In contrast, first symptoms and MS type were the major contributors to delays: gait problems were associated with longer contact-to-evaluation times, depression as a concomitant symptom with longer evaluation-to-diagnosis times, and having primary progressive MS prolonged both phases. In addition, living in mountainous areas was associated with longer contact-to-evaluation times, whereas diagnosis after 2000 was associated with faster diagnoses. Conclusion: For a quicker diagnosis, awareness of MS as a differential diagnosis of gait disorders and the co-occurrence of depression at onset should be raised, and these symptoms should be attentively followed.

Background: Clinician-assessed Expanded Disease Status Scale (EDSS) is gold standard in clinical investigations but normally unavailable in population-based, patient-centred MS-studies. Our objective was to develop a selfreported gait measure reflecting EDSS-categories. Methods: We developed the self-reported disability status scale (SRDSS) with three categories (≤3.5, 4-6.5, ≥7) based on three mobility-related questions. The SRDSS was determined for 173 persons with MS and validated against clinical EDSS to calculate sensitivity and specificity. Results: Accuracy was 88.4% (153 correctly classified) and weighted kappa 0.73 (0.62-0.84). Sensitivity/specificity-pairs were 94.5%/77.8%, 69.0%/94.7% and 100%/98.2% for SRDSS ≤3.5, 4-6.5 and ≥7, respectively. Conclusions: Self-reported SRDSS approximates EDSS-categories well and fosters comparability between clinical and population-based studies. questionnaire of the Swiss MS Registry (SMSR), only 11% knew their EDSS-score (unpublished data). This lack of knowledge amongst PwMS about the own EDSS poses substantial challenges for observational studies relying on patient self-reports such as the SMSR or the UK MS Registry, because this hinders interstudy comparability (Ford et al., 2012;Puhan et al., 2018;Steinemann et al., 2018).Although self-reported EDSS-proxy measures have been proposed, no instrument has emerged as a standard (Collins et al., 2016). Therefore, there is still a need for short, reliable, and robust instruments

Currently used outcome measures are inadequate for patients with impaired mobility, and there is a dire need of specifically designed outcome measures for routine care that are less burdensome and short-term responsive.