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

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Self Report
Chronic Progressive Multiple Sclerosis

Keywords

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

Cite this

Skjerbæk, Anders Guldhammer ; Boesen, Finn ; Petersen, Thor ; Rasmussen, Peter Vestergaard ; Stenager, Egon ; Nørgaard, Michael ; Feys, Peter ; Kjeldgaard-Jørgensen, Marie Louise ; Hvid, Lars Grøndahl ; Dalgas, Ulrik. / Can we trust self-reported walking distance when determining EDSS scores in patients with multiple sclerosis? The Danish MS hospitals rehabilitation study. In: Multiple Sclerosis Journal. 2019 ; Vol. 25, No. 12. pp. 1653-1660.
@article{709733b2be23430db57e946d2f0c08ba,
title = "Can we trust self-reported walking distance when determining EDSS scores in patients with multiple sclerosis?: The Danish MS hospitals rehabilitation study",
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.",
keywords = "EDSS, Expanded Disability Status Scale, Outcome measurement, Walking, multiple sclerosis, primary progressive MS",
author = "Skjerb{\ae}k, {Anders Guldhammer} and Finn Boesen and Thor Petersen and Rasmussen, {Peter Vestergaard} and Egon Stenager and Michael N{\o}rgaard and Peter Feys and Kjeldgaard-J{\o}rgensen, {Marie Louise} and Hvid, {Lars Gr{\o}ndahl} and Ulrik Dalgas",
year = "2019",
month = "10",
day = "1",
doi = "10.1177/1352458518795416",
language = "English",
volume = "25",
pages = "1653--1660",
journal = "Multiple Sclerosis Journal",
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Can we trust self-reported walking distance when determining EDSS scores in patients with multiple sclerosis? The Danish MS hospitals rehabilitation study. / Skjerbæk, Anders Guldhammer; Boesen, Finn; Petersen, Thor; Rasmussen, Peter Vestergaard; Stenager, Egon; Nørgaard, Michael; Feys, Peter; Kjeldgaard-Jørgensen, Marie Louise; Hvid, Lars Grøndahl; Dalgas, Ulrik.

In: Multiple Sclerosis Journal, Vol. 25, No. 12, 01.10.2019, p. 1653-1660.

Research output: Contribution to journalJournal articleResearchpeer-review

TY - JOUR

T1 - Can we trust self-reported walking distance when determining EDSS scores in patients with multiple sclerosis?

T2 - The Danish MS hospitals rehabilitation study

AU - Skjerbæk, Anders Guldhammer

AU - Boesen, Finn

AU - Petersen, Thor

AU - Rasmussen, Peter Vestergaard

AU - Stenager, Egon

AU - Nørgaard, Michael

AU - Feys, Peter

AU - Kjeldgaard-Jørgensen, Marie Louise

AU - Hvid, Lars Grøndahl

AU - Dalgas, Ulrik

PY - 2019/10/1

Y1 - 2019/10/1

N2 - 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.

AB - 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.

KW - EDSS

KW - Expanded Disability Status Scale

KW - Outcome measurement

KW - Walking

KW - multiple sclerosis

KW - primary progressive MS

U2 - 10.1177/1352458518795416

DO - 10.1177/1352458518795416

M3 - Journal article

C2 - 30124106

VL - 25

SP - 1653

EP - 1660

JO - Multiple Sclerosis Journal

JF - Multiple Sclerosis Journal

SN - 1352-4585

IS - 12

ER -