How patients with neuromyelitis optica spectrum disease accumulate disability

Background: It is believed that patients with neuromyelitis optica spectrum disease acquire disability exclusively through relapses. However, the possibility of disability accumulation in the absence of relapses has also been suggested. We quantified irreversible disability accumulation in the presence and absence of relapses in neuromyelitis optica spectrum disease. Methods: We identified patients with neuromyelitis optica spectrum disease in the MSBase registry. Disability-worsening events were required to be sustained until the end of follow-up. Worsening in the absence of relapses was validated through primary record review. Results: Over 884 patient-years of follow-up, we identified 32 disability-worsening events in 31 patients. Notably, six events (18.7%) in five patients (1.9%) occurred in the absence of relapses. A positive association was identified between relapse trajectory and the hazard of disability worsening (hazard ratio (95% credible interval): 2.36 (1.61, 3.64)), and an inverse relationship with disability worsening occurring in the absence of relapses (0.41 (0.11, 1.47)). Conclusion: Irreversible disability worsening was rare in this proactively treated cohort of neuromyelitis optica spectrum disease patients (3.6 events per 100 patient-years). However, almost 19% of worsening occurred in the absence of relapses, reassuringly in only 2% of patients. Our findings support relapses as the principal driver of disability in neuromyelitis optica spectrum disease while also providing evidence of relapse-independent disability worsening beyond identifiable comorbidities.

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Publication Details

Journal
Multiple Sclerosis Journal
Published
2026-10-08
DOI
https://doi.org/10.1177/13524585261489039
Primary Topic
Multiple Sclerosis Research Studies
Type
article
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article

How patients with neuromyelitis optica spectrum disease accumulate disability

Sifat Sharmin, Jeannette Lechner‐Scott, Guy Laureys, Tomáš Kalinčík et al.
Multiple Sclerosis Journal
Multiple Sclerosis Research Studies
article

How patients with neuromyelitis optica spectrum disease accumulate disability

Sifat Sharmin, Jeannette Lechner‐Scott, Guy Laureys, Tomáš Kalinčík, Dana Horáková, Helmut Butzkueven, Bassem Yamout, Mastura Monif, Anneke van der Walt, Sara Eichau, Raed Alroughani, Cavit Boz, Izanne Roos, Petra Nytrová, Samia Joseph Khoury, Aysun Soysal, Recai Türkoğlu, Francesco Patti, Abdullah Rashid Al-Asmi, Eva Havrdová, Pakeeran Siriratnam, Ayşe Altıntaş, Vilija Jokubaitis, Serkan Özakbaş
article en

Abstract

Background: It is believed that patients with neuromyelitis optica spectrum disease acquire disability exclusively through relapses. However, the possibility of disability accumulation in the absence of relapses has also been suggested. We quantified irreversible disability accumulation in the presence and absence of relapses in neuromyelitis optica spectrum disease. Methods: We identified patients with neuromyelitis optica spectrum disease in the MSBase registry. Disability-worsening events were required to be sustained until the end of follow-up. Worsening in the absence of relapses was validated through primary record review. Results: Over 884 patient-years of follow-up, we identified 32 disability-worsening events in 31 patients. Notably, six events (18.7%) in five patients (1.9%) occurred in the absence of relapses. A positive association was identified between relapse trajectory and the hazard of disability worsening (hazard ratio (95% credible interval): 2.36 (1.61, 3.64)), and an inverse relationship with disability worsening occurring in the absence of relapses (0.41 (0.11, 1.47)). Conclusion: Irreversible disability worsening was rare in this proactively treated cohort of neuromyelitis optica spectrum disease patients (3.6 events per 100 patient-years). However, almost 19% of worsening occurred in the absence of relapses, reassuringly in only 2% of patients. Our findings support relapses as the principal driver of disability in neuromyelitis optica spectrum disease while also providing evidence of relapse-independent disability worsening beyond identifiable comorbidities.

Multiple Sclerosis Journal
The Royal Melbourne Hospital (AU), Koç University (TR), İzmir University of Economics (TR), Karadeniz Technical University (TR), The University of Melbourne (AU), Charles University (CZ), John Hunter Hospital (AU), Ghent University Hospital (BE), The Alfred Hospital (AU), Walton Centre (GB), Amiri Hospital (KW), University of Catania (IT), Bakırköy Psychiatric Hospital (TR), Hunter Medical Research Institute (AU), Hospital Universitario Virgen Macarena (ES), American University of Beirut Medical Center (LB), Haydarpaşa Numune Eğitim ve Araştırma Hastanesi (TR), Policlinico Universitario di Catania (IT), Sultan Qaboos University Hospital (OM), Farabi Hastanesi (TR), Hunter New England Local Health District (AU), General University Hospital in Prague (CZ), Alfred Health (AU), Koç Üniversitesi Translasyonel Tıp Araştırma Merkezi (TR), Sultan Qaboos University (OM), Monash University (AU), University of Newcastle Australia (AU)
Openalex Percentile: Top 12%
Multiple Sclerosis Research Studies
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