Fatigue at enrollment predicts EDSS worsening in the New York State Multiple Sclerosis Consortium

Mult Scler. 2020 Jan;26(1):99-108. doi: 10.1177/1352458518816619. Epub 2018 Dec 3.


Background: Fatigue is one of the most common and distressing symptoms among persons with multiple sclerosis (pwMS).

Objective: The aim of this study is to evaluate fatigue as a predictor for disease worsening among pwMS.

Methods: In this retrospective cohort study of New York State MS Consortium (NYSMSC) registry, MS patients reporting moderate-to-severe fatigue at study enrollment (n = 2714) were frequency matched to less-fatigued subjects (n = 2714) on age, baseline Kurtzke Expanded Disability Status Scale (EDSS), disease duration, and MS phenotype. Change from baseline patient-reported outcomes (PROs), as measured by LIFEware, categorized participants into two groups: those with stable/improved outcomes and those who worsened. In a subgroup of patients with longitudinal data (n = 1951), sustained EDSS worsening was analyzed using Cox proportional hazards modeling to explore the effect of fatigue.

Results: The median survival time from study enrollment to sustained EDSS worsening was 8.7 years (CI: 7.2-10.1). Participants who reported fatigue at baseline were more likely to experience sustained EDSS worsening during follow-up (HR: 1.4, 95% CI: 1.2-1.7). Patients who were fatigued at baseline were also more likely to report worsening psychosocial limitations (all ps ⩽ 0.01).

Conclusion: In addition to being a common symptom of MS, severe fatigue was a significant predictor for EDSS worsening in the NYSMSC.

Keywords: EDSS worsening; Fatigue; patient-reported outcomes; progression.

MeSH terms

  • Adult
  • Disease Progression*
  • Fatigue / etiology
  • Fatigue / physiopathology*
  • Female
  • Follow-Up Studies
  • Humans
  • Male
  • Middle Aged
  • Multiple Sclerosis / complications
  • Multiple Sclerosis / physiopathology*
  • New York
  • Patient Reported Outcome Measures*
  • Prognosis
  • Registries*
  • Retrospective Studies
  • Severity of Illness Index*