ECTRIMS eLearning

Can we trust self-reported walking distance when determining EDSS scores? – A part of the Danish MS Hospitals Rehabilitation Study
ECTRIMS Learn. Skjerbaek A. 10/26/17; 200031; P376
Mr. Anders Guldhammer Skjerbaek
Mr. Anders Guldhammer Skjerbaek
Contributions
Abstract

Abstract: P376

Type: Poster

Abstract Category: Clinical aspects of MS - 8 Clinical assessment tools

Introduction: In multiple sclerosis (MS) the expanded disability status scale (EDSS) is, despite well-known limitations, widely accepted as the main assessment tool and gold standard when describing disease severity and progression. Although the EDSS is highly dependent on patients walking capacity, self-reported statements about walking distance are ordinarily acceptable. However, this may lead to imprecise EDSS scoring due to potential patient mis-judgement and relatedly inappropriate treatment decisions. Nonetheless, surprisingly little is known about the concordance between self-reported and actual walking distance in MS. Thus, the purpose of this study was to compare the self-reported statements on walking distance provided during EDSS assessment with actual standardized walking performance.
Materials and methods: 303 patients with MS and an EDSS≥4, who was part of the Danish MS Hospitals Rehabilitation Study, were asked to estimate their walking distance according to the EDSS walking classification within the EDSS range 4.0-7.5 (>500 m; 300-500 m; 200-300m; 100-200 m; 20-100 m; 5-20 m; 0-5 m). Subsequently, they performed a maximum walking distance test, which was terminated when the participant was totally exhausted or passed 500 m. Finally, patients underwent a full neurologic examination by a trained Neurologist including EDSS determination based on patient's actual walking performance.
Results: Complete datasets were collected from 273 out of 303 enrolled patients. A total of 145 patients (53%) misjudged their actual walking distance, by one category or more. Of those that misjudged, 73 % were underestimating. Persons using a walking aid (EDSS 6.0-6.5) or persons restricted to wheelchair (EDSS 7.0-7.5) more frequently misjudged their actual walking distance than fully ambulatory persons walking unaided (66% vs. 45%, p= 0.0005). Comparisons of EDSS scores based on actual walking distance with EDSS scores based on self-reported walking distance reveals, that 86% is at a level that affects the EDSS score by ±0.5 point on the scale.
Conclusion: This analysis demonstrated variability between patient reported and actual walking distance. Particularly persons using walking aids tended to misjudge their walking ability. In most cases, difference between self-reported walking and actual walking affected the EDSS by ±0.5 point, however in a smaller subgroup misjudgments led to EDSS variabilities by more than ±1.0 point.
Disclosure: Skjerbaek AG, Boesen F, Noergaard M, Feys P, Stenager E, Petersen T, Rasmussen PV, Kjeldgaard-Jørgensen ML, Hvid LG, Dalgas U:
- The study was funded by the Danish MS Hospitals. No other conflicts of interest are declared.

Abstract: P376

Type: Poster

Abstract Category: Clinical aspects of MS - 8 Clinical assessment tools

Introduction: In multiple sclerosis (MS) the expanded disability status scale (EDSS) is, despite well-known limitations, widely accepted as the main assessment tool and gold standard when describing disease severity and progression. Although the EDSS is highly dependent on patients walking capacity, self-reported statements about walking distance are ordinarily acceptable. However, this may lead to imprecise EDSS scoring due to potential patient mis-judgement and relatedly inappropriate treatment decisions. Nonetheless, surprisingly little is known about the concordance between self-reported and actual walking distance in MS. Thus, the purpose of this study was to compare the self-reported statements on walking distance provided during EDSS assessment with actual standardized walking performance.
Materials and methods: 303 patients with MS and an EDSS≥4, who was part of the Danish MS Hospitals Rehabilitation Study, were asked to estimate their walking distance according to the EDSS walking classification within the EDSS range 4.0-7.5 (>500 m; 300-500 m; 200-300m; 100-200 m; 20-100 m; 5-20 m; 0-5 m). Subsequently, they performed a maximum walking distance test, which was terminated when the participant was totally exhausted or passed 500 m. Finally, patients underwent a full neurologic examination by a trained Neurologist including EDSS determination based on patient's actual walking performance.
Results: Complete datasets were collected from 273 out of 303 enrolled patients. A total of 145 patients (53%) misjudged their actual walking distance, by one category or more. Of those that misjudged, 73 % were underestimating. Persons using a walking aid (EDSS 6.0-6.5) or persons restricted to wheelchair (EDSS 7.0-7.5) more frequently misjudged their actual walking distance than fully ambulatory persons walking unaided (66% vs. 45%, p= 0.0005). Comparisons of EDSS scores based on actual walking distance with EDSS scores based on self-reported walking distance reveals, that 86% is at a level that affects the EDSS score by ±0.5 point on the scale.
Conclusion: This analysis demonstrated variability between patient reported and actual walking distance. Particularly persons using walking aids tended to misjudge their walking ability. In most cases, difference between self-reported walking and actual walking affected the EDSS by ±0.5 point, however in a smaller subgroup misjudgments led to EDSS variabilities by more than ±1.0 point.
Disclosure: Skjerbaek AG, Boesen F, Noergaard M, Feys P, Stenager E, Petersen T, Rasmussen PV, Kjeldgaard-Jørgensen ML, Hvid LG, Dalgas U:
- The study was funded by the Danish MS Hospitals. No other conflicts of interest are declared.

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