Assessing Progression Independent of Relapse Activity in Multiple Sclerosis Using a Patient-Reported Disability Measure and Self-Administered Neuroperformance Outcomes - Summary - MDSpire
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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 findings of the study suggest that patient-reported outcomes and self-administered neuroperformance metrics are crucial in understanding the progression of disability in MS. The early manifestation of PIRA indicates that patients may experience significant disability before clinical relapses occur, highlighting the need for continuous monitoring of patient-reported symptoms. The study also points to the potential role of high-efficacy therapies in altering the prevalence of PIRA, suggesting that treatment strategies may need to be tailored based on individual patient experiences reported through PROs. Furthermore, the correlation between self-reported measures and objective MRI findings underscores the importance of integrating subjective assessments into clinical practice. This approach could lead to a more nuanced understanding of disease progression and improve patient outcomes by aligning treatment plans with the lived experiences of individuals with MS.

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

The authors concluded that integrating patient-reported outcomes and self-administered neuroperformance metrics into the evaluation of disability progression in MS can enhance the detection of PIRA. They emphasized the importance of these measures in providing a more comprehensive understanding of disease progression, which could ultimately inform clinical decision-making and lead to more personalized treatment approaches for individuals with MS.

Original Source(s)

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

  • 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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