Patient-reported gradual worsening reveals progression beyond MS subtypes

Area of Science:

• Neurology
• Clinical Research
• Patient-Reported Outcomes

Background:

• Gradual worsening in relapsing-remitting multiple sclerosis (RRMS) may precede the transition to secondary progressive multiple sclerosis (SPMS).
• Understanding patient-reported experiences of worsening is crucial for early detection and management.
• Assessing the concordance between patient reports and clinical classifications is essential.

Purpose of the Study:

• To quantify self-reported gradual worsening in MS patients.
• To assess the agreement between patient-reported worsening and clinically recorded MS subtype (RRMS vs. SPMS).
• To identify baseline predictors associated with discordance between patient reports and clinical classification.

Main Methods:

• Analysis of 1640 participants with incident RRMS from a population-based study (2005-2019).
• Utilized a 2021 follow-up survey for patient-reported gradual worsening.
• Employed logistic regression and Kaplan-Meier estimates, with Cox proportional hazards models to analyze clinical data (Expanded Disability Status Scale - EDSS) and subtype classification from the Swedish MS registry.

Main Results:

• 24% of RRMS participants and 23% of SPMS participants reported discordant worsening status.
• Self-reported worsening correlated with higher risks of reaching EDSS 3 and EDSS 4.
• In RRMS, older age and higher baseline EDSS predicted self-reported worsening. In SPMS, self-reported worsening preceded clinical classification by an average of 4.1 years.

Conclusions:

• Patient-reported gradual worsening is a valuable indicator of disability accumulation in MS.
• Patient reports may facilitate earlier identification of disease progression compared to formal subtype reclassification.
• Integrating structured patient-reported outcomes into routine MS monitoring is recommended.