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Assessing disability in multiple sclerosis: concordance between patient-recorded and neurologist-recorded EDSS
Mónica Daniela Salgado-Cabrera1, Lidia Joanna Alberto-López2, Sofía Chávez-Martínez2
1Universidad de las Americas Puebla, México; Centro de Hematología y Medicina Interna, Clínica Ruiz, México.
Background:
The Expanded Disability Status Scale (EDSS) is the standard tool for assessing disability in multiple sclerosis (MS). While traditionally conducted by clinicians, patientreported versions have emerged as viable alternatives for remote monitoring. However, the concordance between self-reported and neurologist-assessed EDSS scores remains crucial for clinical utility.
Objective:
To evaluate the agreement between patient-reported and neurologist-assessed EDSS scores in a large cohort of MS patients and explore the applicability of self-reported EDSS in routine practice.
Methods:
This cross-sectional study included 1,425 patients with confirmed MS who underwent autologous hematopoietic stem cell transplantation (HSCT) at Clínica Ruiz in Mexico between 2015 and 2025. EDSS scores from patients and neurologists were collected within a 30-day interval. Analyses included Spearman's correlation, intraclass correlation coefficients (ICC), Wilcoxon signed-rank tests, and Bland-Altman plots.
Results:
There was a strong and statistically significant correlation between patient-reported and neurologist-assessed EDSS scores (r= 0.846, p< 0.001). The single-measure ICC demonstrated excellent reliability (0.845-0.846), with average measure ICCs Powered by Editorial Manager® and ProduXion Manager® from Aries Systems Corporation ranging from 0.916 to 0.923. A discrepancy of ≥1 EDSS point was found in 35 % of cases. Subgroup analysis showed consistent correlations across neurologists.
Conclusion:
Patient-reported EDSS scores demonstrate strong concordance with neurologist assessments and may be a reliable alternative for monitoring MS-related disability, especially in settings with limited access to specialists. Nonetheless, clinicians should remain aware of potential discrepancies and consider combining self-reported data with clinical evaluation for optimal decision-making.
