First Published June 22, 2022 – Multiple Sclerosis Journal
Assessment of multiple sclerosis (MS) disease activity is critical for understanding treatment effectiveness, informing treatment decisions, and monitoring disease progression. Magnetic resonance imaging (MRI) findings, clinician-administered assessments, and patient questionnaires are used to measure disease activity and track changes over time. The Expanded Disability Status Scale (EDSS) is a validated, clinician-administered scale used to measure disability in MS.1 The scale considers the impairment in the function of the pyramidal, cerebellar, brainstem, sensory, bladder, bowel, visual, and cerebral systems.
The EDSS is widely used in clinical trials,2 but its use in routine clinical practice is limited due to the time required to complete the scale and the complexity of scoring.3 As a result, EDSS scores are documented rarely and inconsistently in real-world data sources such as electronic medical records (EMRs). Real-world data sources have played an increasingly important role in MS research in recent years,4 but the lack of EDSS scores in these data sources makes it difficult to address some questions related to disease progression, treatment patterns, and patient outcomes. While existing statistical methods for imputing missing scores can be used in some research studies, many patients in real-world data sets lack the necessary EDSS scores over time to make imputation feasible.