Assessing Progression Independent of Relapse Activity in Multiple Sclerosis Using a Patient-Reported Disability Measure and Self-Administered Neuroperformance Outcomes - Summary - MDSpire

Evaluating Disability Progression in Multiple Sclerosis Through Patient-Reported Outcomes and Self-Administered Neuroperformance Metrics, Excluding Relapse Activity

  • By

  • Evy M. Reinders

  • Ariadna Masot-Llima

  • Susana Otero-Romero

  • René Carvajal

  • Álvaro Cobo-Calvo

  • Pere Carbonell-Mirabent

  • Jordina Beltran

  • Maria Jesús Arévalo

  • Helena Ariño

  • Georgina Arrambide

  • Cristina Auger

  • Luca Bollo

  • Joaquín Castilló

  • Manuel Comabella

  • Ingrid Galán

  • Alexis García-Sarreón

  • Andrew Goodman

  • Carrie M. Hersh

  • Delon La Puma

  • Le H. Hua

  • Luciana Midaglia

  • Neus Mongay-Ochoa

  • Ellen M. Mowry

  • Agustín Pappolla

  • Breogán Rodríguez-Acevedo

  • Jordi Río

  • Paula Tagliani

  • Ángela Vidal-Jordana

  • Andreu Vilaseca

  • Ana Zabalza

  • Deborah Pareto

  • Carlos Nos

  • Menno Schoonheim

  • Eva Strijbis

  • Jaume Sastre-Garriga

  • Madalina Tivarus

  • Tjalf Ziemssen

  • Àlex Rovira

  • Xavier Montalban

  • Mar Tintoré

  • Carmen Tur

  • July 6, 2026

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Objective:

To investigate the ability of patient-reported outcomes (PROs) and self-administered tests to define disability worsening and progression independent of relapses in multiple sclerosis (MS).

Approach:
  • Study Design: Observational retrospective study using data from the MS PATHS network, analyzing real-world patient data from November 2016 to January 2022.
  • Participants: Patients with MS who had a minimum of 3 clinical assessments and at least 6 months of follow-up were included, alongside healthy controls for comparison.
  • Data Collection: Clinical data were collected using the MS Performance Test (MSPT), which includes PROs and self-administered neuroperformance tests.
Key Findings:
  • PIRA can manifest early in MS and is associated with unfavorable long-term outcomes.
  • The prevalence of PIRA may decrease under high-efficacy disease-modifying therapy, though the relative proportion of PIRA events may increase.
  • The ability of PROs and self-administered tests to detect PIRA has not been previously investigated.
Interpretation:

The study aims to assess the concurrent validity of self-reported measures against clinician-determined definitions of disability worsening and PIRA, as well as their association with MRI measures and quality of life.

Limitations:
  • Self-reported relapses may affect the identification of PIRA.
  • The pathological underpinnings of PIRA detected through PROs remain unknown.
Conclusion:

The study seeks to enhance understanding of disability progression in MS through innovative patient-reported measures.

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