Discordance of reported multiple sclerosis clinical course amongst patients and providers

Background: Effective communication between providers and people with multiple sclerosis (pwMS) is essential. Objectives: To determine the level of concordance between provider- and pwMS-reported disease course. Methods: Patient encounters from December 2015 through April 2020 were retrospectively reviewed for MS disease course self-reported by the patient and separately documented by the provider at each visit. The proportion of agreement was compared across disease course Cohen's kappa, and subsequently stratified by sex, race, and level education. Results: Across 1335 encounters, the proportion of disease course agreement varied. Compared with RRMS, there was statistically significant difference across all other disease courses. Overall concordance between providers and pwMS was 64 % with a Cohen's kappa of 0.312. Concordance was higher amongst female patients, black patients, and patients with a higher level of education (>14 years). Conclusion: Overall agreement on MS disease course amongst patients and providers was suboptimal. A concerted effort to understand these discrepancies is needed.