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 G.; Dalgas, Ulrik

doi:10.1177/1352458518795416

Cited by 19 publications

(15 citation statements)

References 19 publications

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“…Several factors, such as fatigability, depression, and impaired sensory feedback, can influence the perceived exertion in PwMS [3]. These results corroborate with previous studies that have demonstrated perceived exertion disorders in PwMS and the importance of exploring their walking disabilities by standardized and objective measures [6,12]. These aspects should be considered in futures studies.…”

Section: Discussionsupporting

confidence: 88%

“…Understanding the severity of walking disorders in PwMS is essential for providing optimal medical care [5]. Although the Expanded Disability Severity Scale (EDSS) has been considered the gold standard for diagnosing the clinical and functional severity of MS, recent studies have highlighted its limitations and suggested that the EDSS should be supplemented by other objective standardized measurements [6]. The main limitation of the EDSS is that the walking capacity is self-reported by PwMS [7]; this subjective assessment with a possible reporting bias delivers information that could be influenced by cognitive deficits and desire to impress the healthcare provider [8].…”

Section: Introductionmentioning

confidence: 99%

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Evaluation of Prolonged Walking in Persons with Multiple Sclerosis: Reliability of the Spatio-Temporal Walking Variables during the 6-Minute Walk Test

Hadouiri

Monnet

Gouelle³

et al. 2021

Sensors

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Background: Walking disorders represent the most disabling condition in persons with Multiple Sclerosis (PwMS). Several studies showed good reliability of the 6-min walk test (6MWT) (i.e., especially distance traveled), but little is known about the reliability of the Spatio-temporal (ST) variables in the 6MWT. Objective: To evaluate the test-retest reliability of ST variables and perceived exertion during the 6MWT in PwMS and comparable healthy persons. Methods: We explored three 1-min intervals (initial: 0′–1′, middle: 2′30″–3′30″, end: 5′–6′) of the 6MWT. Six ST variables and perceived exertion were measured (respectively, using the GAITRite system and the Borg Scale). These measurements were performed twice, 1 week apart. The test-retest effects were assessed using the intraclass correlation coefficient (ICC) or the weighted kappa. Results: Forty-five PwMS and 24 healthy persons were included. The test-retest reliability of ST variables values was good-to-excellent for PwMS (ICC range: 0.858–0.919) and moderate-to-excellent for healthy persons (ICC range: 0.569–0.946). The test-retest reliability values of perceived exertion were fair for PwMS (weighted kappa range: 0.279–0.376) and substantial for healthy persons (weighted kappa range: 0.734–0.788). Conclusion: The measurement of ST variables during these 6MWT intervals is reliable and applicable in clinical practice and research to adapt rehabilitation care in PwMS.

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Section: Discussionsupporting

confidence: 88%

Section: Introductionmentioning

confidence: 99%

Evaluation of Prolonged Walking in Persons with Multiple Sclerosis: Reliability of the Spatio-Temporal Walking Variables during the 6-Minute Walk Test

Hadouiri

Monnet

Gouelle³

et al. 2021

Sensors

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“…In these groups, pwMS with unchanged EDSS (pEDSS = gmEDSS) and those with discrepant EDSS (pEDSS < or > gmEDSS), we found that progressive phenotype and higher scores in FSS and PHQ-9 increased the probability of inaccurate estimates of MWD and therefore belonged to the discrepant group. These data are consistent with the findings of Skjearbak et al [ 30 ], showing that the extent of misclassification of MWD increases in pwMS with fatigability and progressive phenotype and that depressive symptoms are related to self-perception of MWD; these findings emphasize the need to improve disability assessment especially in pwMS with moderate disability. Furthermore, a subgroup analysis conducted on the 75 patients in whom the obAS was calculated showed that GM® seems to effectively improve the accuracy of the MWD.…”

Section: Discussionsupporting

confidence: 92%

Disability assessment using Google Maps

et al. 2021

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Objectives To evaluate the concordance between Google Maps® application (GM®) and clinical practice measurements of ambulatory function (e.g., Ambulation Score (AS) and respective Expanded Disability Status Scale (EDSS)) in people with multiple sclerosis (pwMS). Materials and methods This is a cross-sectional multicenter study. AS and EDSS were calculated using GM® and routine clinical methods; the correspondence between the two methods was assessed. A multinomial logistic model is investigated which demographic (age, sex) and clinical features (e.g., disease subtype, fatigue, depression) might have influenced discrepancies between the two methods. Results Two hundred forty-three pwMS were included; discrepancies in AS and in EDDS assessments between GM® and routine clinical methods were found in 81/243 (33.3%) and 74/243 (30.4%) pwMS, respectively. Progressive phenotype (odds ratio [OR] = 2.8; 95% confidence interval [CI] 1.1–7.11, p = 0.03), worse fatigue (OR = 1.03; 95% CI 1.01–1.06, p = 0.01), and more severe depression (OR = 1.1; 95% CI 1.04–1.17, p = 0.002) were associated with discrepancies between GM® and routine clinical scoring. Conclusion GM® could easily be used in a real-life clinical setting to calculate the AS and the related EDSS scores. GM® should be considered for validation in further clinical studies. Supplementary Information The online version contains supplementary material available at 10.1007/s10072-021-05389-7.

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“…The upper arm function and the subtle cognitive deficits are underrepresented in the EDSS (46). Furthermore, the EDSS scores were mostly based on the walking distance reported by the patients, which might lead to an incorrect evaluation of the EDSS score (47).…”

Section: Discussionmentioning

confidence: 99%

Glial Activation Markers in CSF and Serum From Patients With Primary Progressive Multiple Sclerosis: Potential of Serum GFAP as Disease Severity Marker?

et al. 2019

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Background: In progressive multiple sclerosis (MS), glial activation is thought to be a relevant mechanism of disability progression. Therefore, in vivo assessment of the glial cell activity is, in the emerging treatment era of primary progressive MS (PPMS), more important than ever. Objectives: To test the association of cerebrospinal fluid (CSF) and serum markers of glial activation in PPMS patients; including glial fibrillary acidic protein (GFAP), chitinase-3-like protein 1 (CHI3L1), soluble variant of triggering receptor expressed on myeloid cells 2 (sTREM2), and marker of neuroaxonal damage (Neurofilament light chain, NfL) as well as clinical severity. Methods: CSF and serum samples from PPMS patients were collected in the MS-centers at Universities of Freiburg ( n = 49), Ulm ( n = 27), Muenster ( n = 11), and Rostock ( n = 6). sTREM2 and CHI3L1 levels were measured using the previously reported ELISA assays, while NfL and GFAP were measured using SIMOA assays. Clinical data included age, gender, disease duration, treatment status, and Expanded Disability Status Scale (EDSS). Results: 93 CSF samples and 71 matching serum samples were analyzed. The median age of patients was 49 years and disease duration 4.5 years. GFAP serum correlated with EDSS after correction for age (β = 0.3, p = 0.001). Furthermore, EDSS was higher in patients with a GFAP serum level ≥ 151.7 pg/ml compared to patients with GFAP serum below this cut-off (5.5 vs. 4.0, p = 0.009). Other markers did not correlate with the clinical severity. Moreover, we found a correlation between NfL CSF and GFAP CSF , sTREM2 and CHI3L1 (ρ = 0.4 for GFAP CSF and sTREM2, ρ = 0.3 for CHI3L1, p < 0.01 for sTREM2 and CHI3L1 and <0.001 for GFAP CSF ). CHI3L1 did not correlate with GFAP CSF but with sTREM2 (ρ = 0.4, p < 0.01). Discussion: The correlation between the glial activation markers in CSF with the markers of neuroaxonal demise supports the notion of the glial involvement in PPMS. The positive correlation between GFAP CSF with disease duration and GFAP serum with the clinical severity of the disease may highlight a particular role of the astrocytes in PPMS and mark the potential of GFAP serum as a disease severity marker.

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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

Abstract: 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.

Cited by 19 publications

References 19 publications

Evaluation of Prolonged Walking in Persons with Multiple Sclerosis: Reliability of the Spatio-Temporal Walking Variables during the 6-Minute Walk Test

Evaluation of Prolonged Walking in Persons with Multiple Sclerosis: Reliability of the Spatio-Temporal Walking Variables during the 6-Minute Walk Test

Disability assessment using Google Maps

Glial Activation Markers in CSF and Serum From Patients With Primary Progressive Multiple Sclerosis: Potential of Serum GFAP as Disease Severity Marker?

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