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- Title
(QOL15) Multiple Sclerosis Management and Expanded Disability Status Scale: A Great Start, but a Reason for Change Was Never So Apparent and Needed.
- Authors
Gudesblatt, Mark; Srinivasan, Jared; Kaczmarek, Olivia; Drost, Taylor; Bumstead, Barbara; Fafard, Lori; Jaenicke, Kaitlyn; Buhse, Marijean; Zarif, Myassar; Golan, Daniel; Wilken, Jeffrey; Sullivan, Cynthia; Fratto, Timothy; Giovannoni, Gavin
- Abstract
Background: Since the Expanded Disability Status Scale (EDSS) was pioneered by Dr John Kurtzke in 1967, it has been incorporated into clinical trial measurements in people with multiple sclerosis (PwMS). When combined with reported relapse rates and magnetic resonance imaging measurements of disease activity, EDSS has been the basis for approval of >15 disease-modifying therapies (DMTs). No evidence of disease activity (NEDA) has been proposed as the goal for optimizing DMT. EDSS remains critical for both NEDA and treatment. Use of a nonlinear scale to measure disability can be problematic if there is great variability of PwMS within homologous EDSS-defined disability levels. Functional ability reflects the combined impact of cognitive function, manual dexterity, ambulation, and other factors. If the degree of variability of these "abilities" exceeds 20%, this scale would no longer be valid. Objectives: To explore the combined variability of functional performance with groups of similar disability across important aspects of ability. Methods: Retrospective review of prospective registry of PwMS who were evaluated by multidimensional computerized cognitive testing, digital gait analysis, and patient-reported outcomes (PROs) for hand function that had simultaneous measurements of PDDS or EDSS. Results: 258 PwMS, 73% female, age 46 ± 10, multidomain computerized cognitive testing global summary score of 7 domains had adjacent EDSS score overlap (0-2.5, 3-4.5, 5-6.5, and >7) of 65% and extreme EDSS group overlap was 42%. Accumulative cognitive impairment (# cognitive domains impaired >1 SD) was 72% across adjacent EDSS groups, and extreme EDSS group overlap was 38%. 254 PwMS, 72% female, age 46 ± 10, mean normalized velocity for preferred walking speed varied >20% within EDSS groups (A: 0-2.5 [24%], B: 3-4.5 [34%], C: 5-6.5 [53%]) and overlapped >20% (AB: 29%, BC: 25%). 783 PwMS, 74% female, age 49 ± 11, completed PDDS and NARCOMS PRO for both hand function and tremor demonstrated variability >50% across all PDDS (0-1, 2-4, >4) and overlap >50% of adjacent PDDS groups and >32% across extreme PDDS groups. Conclusions: While the EDSS greatly advanced the treatment of MS, the degree of variability of disease impact within and across disability groups warrants immediate abandonment of this measure of care. This should be replaced by clinical trials with objective patient-centric multidimensional measures of disease impact to improve treatment selection and monitoring for progression.
- Subjects
MULTIPLE sclerosis prevention; MULTIPLE sclerosis treatment; CONFERENCES &; conventions; RESEARCH methodology evaluation
- Publication
International Journal of MS Care, 2020, Vol 22, Issue S2, p67
- ISSN
1537-2073
- Publication type
Article