Can we trust self-reported walking distance when determining EDSS scores in patients with multiple sclerosis? The Danish MS hospitals rehabilitation study

Anders Guldhammer Skjerbæk, Finn Boesen, Thor Petersen, Peter Vestergaard Rasmussen, Egon Stenager, Michael Nørgaard, Peter Feys, Marie Louise Kjeldgaard-Jørgensen, Lars Grøndahl Hvid, Ulrik Dalgas

Research output: Contribution to journalJournal articleResearchpeer-review

Abstract

Background: In multiple sclerosis (MS), the Expanded Disability Status Scale (EDSS) reflects disease severity. Although parts of the EDSS are dependent on actual walking distance, self-reported statements are often applied. Objectives: The purpose of the present study was, therefore, to compare self-reported walking distance to actual walking distance to outline how this influences EDSS scoring. Methods: MS patients with EDSS 4.0–7.5 (n = 273) were included from the Danish MS hospitals rehabilitation study (n = 427). All patients subjectively classified their maximal walking distance according to one of seven categories (>500; 300–499; 200–299; 100–199; 20–99; 5–19; 0–4 m). Subsequently, actual maximal walking distance was assessed and EDSS was determined from both self-reported walking distance (EDSS self-report) and actual walking distance (EDSS actual). Results: In 145 patients (53%), self-reported walking distance was misclassified when compared to the actual walking distance. Misclassification was more frequent in patients using walking aids (64% vs. 44%, p < 0.05) and in patients with primary progressive MS (69%, p < 0.05). Misclassification of walking distance corresponded to incorrect EDSS scores (EDSS self-report vs EDSS actual) of ⩾0.5 point in 24%. Conclusion: In MS patients with EDSS 4.0–7.5, 53% misclassified their walking distance yielding incorrect EDSS scores in 24%. Therefore, correct EDSS determination must be based on measurement of actual walking distance.

Original languageEnglish
JournalMultiple Sclerosis Journal
Volume25
Issue number12
Pages (from-to)1653-1660
ISSN1352-4585
DOIs
Publication statusPublished - 1. Oct 2019

Keywords

  • EDSS
  • Expanded Disability Status Scale
  • Outcome measurement
  • Walking
  • multiple sclerosis
  • primary progressive MS

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