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NA;. "Appendix F: Expanded Disability Status Scale (EDSS)." CONTINUUM: Lifelong Learning in Neurology 10 (December 2004): 253–54. http://dx.doi.org/10.1212/01.con.0000293621.60699.95.
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Zurawski, Jonathan, Bonnie I. Glanz, Alicia Chua, et al. "Time between expanded disability status scale (EDSS) scores." Multiple Sclerosis and Related Disorders 30 (May 2019): 98–103. http://dx.doi.org/10.1016/j.msard.2019.02.007.
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Cho, Joong-Yang, Keun-Sik Hong, Ho Jin Kim, et al. "Disability weight for each level of the Expanded Disability Status Scale in multiple sclerosis." Multiple Sclerosis Journal 20, no. 9 (2014): 1217–23. http://dx.doi.org/10.1177/1352458513518259.
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Background: The Expanded Disability Status Scale (EDSS) is the most widely employed ordinal disability scale in multiple sclerosis (MS). However, how far apart the individual EDSS levels are along the disability spectrum has not been formally quantified. Objectives: The objective of this paper is to generate refined disability weights (DWs) for each of the ordinal EDSS levels. Methods: We performed the person trade-off (PTO) procedure to derive DWs of five representative EDSS categories (2, 4, 6, 7 and 9), and DWs of the remaining EDSS categories were assigned by linear interpolation. The modified Delphi process was used to achieve consensus among raters. Results: DWs were 0.021 for EDSS 2, 0.199 for EDSS 4, 0.313 for EDSS 6, 0.617 for EDSS 7, and 0.926 for EDSS 9. Panel members achieved a high degree of consensus for each DW, as indicated by low coefficients of variation. Conclusions: Our DWs confirmed that EDSS is an ordinal scale with highly variable intervals. The availability of DW for each EDSS level allows direct comparison of each MS outcome state with other health states and provides a foundation for the estimation of the disability-adjusted life-years lost of individual patients.
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Lechner-Scott, J., L. Kappos, M. Hofman, et al. "Can the Expanded Disability Status Scale be assessed by telephone?" Multiple Sclerosis Journal 9, no. 2 (2003): 154–59. http://dx.doi.org/10.1191/1352458503ms884oa.
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Information from patients who are unable to continue their visits to a study centre may be of major importance for the interpretatio n of results in multiple sclerosis (MS) clinical trials. To validate a questionnaire based on the Expanded Disability Status Scale (EDSS), patients in five different European centres were assessed independently by pairs of trained EDSS raters, first by telepho ne interview and a few days later by standardized neurological examination. Seventy women and 40 men with an average age of 43.7 years (range 19 -74 years) were included in the study. Mean EDSS score at the last visit was 4.5 (0 -9). EDSS assessment by telepho ne was highly correlated with the EDSS determined by physical examination (Pearson’s correlation coefficient -0.95). A n intraclass correlation coefficient (IC C) of 94.8% was found for the total sample; 77.6% and 86%, respectively, for patients with EDSSB-4.5 (n -46) and \-4.5 (n -64). Kappa values for full agreement were 0.48; for variation by -0.5 steps and -1.0 steps, 0.79 and 0.90, respectively. Best agreement could be found in higher EDSS scores, where assessment by telepho ne interview might be needed most. The telepho ne questionnaire is a valid tool to assess EDSS score in cases where the patient is unable to continue visiting a study centre or in long-term follow-up of trial participants.
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Markowitz, Clyde E., Mary D. Hughes, Daniel D. Mikol, Lisa Shi, MerriKay Oleen-Burkey, and Douglas R. Denney. "Expanded Disability Status Scale Calculator for Handheld Personal Digital Assistant: Reliability Study." International Journal of MS Care 10, no. 2 (2008): 33–39. http://dx.doi.org/10.7224/1537-2073-10.2.33.
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Through a standard neurological examination, the Expanded Disability Status Scale (EDSS) score is traditionally determined by a pen-and-paper method. The objectives of this study were to compare the interrater/method reliability of EDSS scores obtained through the pen-and-paper method with those obtained with the EDSS Calculator, evaluate test-retest reliability of the EDSS Calculator, and examine the validity of EDSS Calculator scores through correlation with the Ambulation Index (AI). During a single office visit, 62 subjects with multiple sclerosis (MS) from six study centers had disability levels evaluated by separate raters using the EDSS calculator and pen-and-paper methods in random order. Seven days later, subjects returned for reevaluation with the EDSS Calculator; AI was also evaluated. Mean EDSS scores for the sample were 3.5 ± 2.2 with the calculator and 3.4 ± 2.0 (range 0–8) with the traditional method. Interrater reliability between scores with the two methods was high (κ = 0.84; confidence interval [CI], 0.74–0.94). Test-retest reliability with the calculator was also high (κ = 0.93; CI, 0.86–0.996). Correlation between disability scores from the EDSS Calculator and AI was 0.73 (P <.001). Relative to the pen-and paper method, the EDSS Calculator was found to be highly reliable and provide valid results when measuring disability in MS patients.
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Collins, Christian DE, Ben Ivry, James D. Bowen, et al. "A comparative analysis of Patient-Reported Expanded Disability Status Scale tools." Multiple Sclerosis Journal 22, no. 10 (2016): 1349–58. http://dx.doi.org/10.1177/1352458515616205.
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Background: Patient-Reported Expanded Disability Status Scale (PREDSS) tools are an attractive alternative to the Expanded Disability Status Scale (EDSS) during long term or geographically challenging studies, or in pressured clinical service environments. Objectives: Because the studies reporting these tools have used different metrics to compare the PREDSS and EDSS, we undertook an individual patient data level analysis of all available tools. Methods: Spearman’s rho and the Bland–Altman method were used to assess correlation and agreement respectively. Results: A systematic search for validated PREDSS tools covering the full EDSS range identified eight such tools. Individual patient data were available for five PREDSS tools. Excellent correlation was observed between EDSS and PREDSS with all tools. A higher level of agreement was observed with increasing levels of disability. In all tools, the 95% limits of agreement were greater than the minimum EDSS difference considered to be clinically significant. However, the intra-class coefficient was greater than that reported for EDSS raters of mixed seniority. The visual functional system was identified as the most significant predictor of the PREDSS–EDSS difference. Conclusion: This analysis will (1) enable researchers and service providers to make an informed choice of PREDSS tool, depending on their individual requirements, and (2) facilitate improvement of current PREDSS tools.
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Ravnborg, M., M. Blinkenberg, F. Sellebjerg, M. Ballegaard, S. Helweg Larsen, and P. Soelberg Sørensen. "Responsiveness of the Multiple Sclerosis Impairment Scale in comparison with the Expanded Disability Status Scale." Multiple Sclerosis Journal 11, no. 1 (2005): 81–84. http://dx.doi.org/10.1191/1352458505ms1120oa.
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The Multiple Sclerosis Impairment Scale (MSIS) is a measure of accumulated deficits assessed by means of a standard neurological examination. We compared the responsiveness of the MSIS with that of the Expanded Disability Status Scale (EDSS). We reviewed 4300 records collected systematically from 1995 to 2003 and identified 534 patients who had clinically definite multiple sclerosis and had had at least two clinical assessments with a time interval of 2-5 years. The rate of deterioration was significantly higher on the MSIS than on the EDSS. The annualized change in EDSS exhibited a maximum at baseline EDSS 4 and a subsequent rapid decline at higher baseline EDSS, while the annualized change in MSIS was fairly stable over a wide middle range of baseline MSIS. The variance of the annualized change in EDSS fluctuated markedly between the baseline EDSS categories, being highest at baseline EDSS 2, while the variance of the annualized change in MSIS was stable. The study indicates that the responsiveness of the MSIS is better than that of the EDSS in terms of both magnitude and stability over the range of measurement.
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Barkhof, Frederik. "MRI in multiple sclerosis: correlation with expanded disability status scale (EDSS)." Multiple Sclerosis Journal 5, no. 4 (1999): 283–86. http://dx.doi.org/10.1177/135245859900500415.
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Magnetic resonance (MR) imaging is very sensitive in showing disseminated MS lesions. Subclinical MR progression occurs frequently, explaining why MR is now used to monitor treatment, even without measurable consequences, of new MR lesions to the patient at this moment. In the light of this clinico-radiological paradox, the significance of MR in MS is discussed, particularly in relation with the expanded disability status scale (EDSS). Gadolinium-enhancing lesions correlate with the occurrence of relapses, CSF myelin breakdown products and, in patients with relapsingremitting disease, with higher EDSS. However, the predictive value of the frequency of enhancement for changes in EDSS is only weak. For conventional T2-weighted MR imaging, the cross-sectional correlation with EDSS varies between 0.15 and 0.60, and is limited mainly by the inherent lack of tissues specificity of T2-weighted images. Both T1 black holes and magnetisation transfer (MT) parameters show a better correlation with EDSS; it should be noted that lesions in which those abnormalities are found go through an initial phase of enhancement as well. For T1 black holes, a correlation up to 0.81 has been reported for SP patients. Post-mortem studies show that black holes and low MT ratios are in vivo markers of axonal loss. Preliminary data indicate that progressive atrophy also correlates with progression on the EDSS scale. More should be learned about the fate of new MR lesion with regards to development of axonal loss, which at present is difficult to predict in the enhancing stage. The existence of escape mechanisms, including remyelination, make a simple correlation with EDSS extremely unlikely, and perhaps not even desirable. Nevertheless, while the clinical effect of a given new lesion may be difficult to ascertain, the absence of (new) MR lesions is prognostically favourable, as will be the degree to which new lesions are prevented by treatment.
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Dujmovic, Irena, Simon Demetz, Alban Millonig, and Florian Deisenhammer. "The effect of fatigability on expanded disability status scale components in multiple sclerosis." Srpski arhiv za celokupno lekarstvo 144, no. 5-6 (2016): 262–65. http://dx.doi.org/10.2298/sarh1606262d.
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Introduction. The Expanded Disability Status Scale (EDSS) is the most widely used disability measure in multiple sclerosis (MS). The effect of fatigability on EDSS components has been underreported to date. Objective We investigated daytime variability in EDSS score and EDSS components - functional scores (FS) and walking distance (WD) up to 500 m, in MS patients who underwent a standardized fatiguing exercise. Methods. Twenty-four patients with relapsing-remitting MS (n = 7), secondary-progressive MS (n = 8) and primary-progressive MS (n = 9) were included. Exclusion criteria were as follows: current MS relapse, infection/fever/flu-like symptoms, conditions prohibiting safe exercise testing, current medication affecting fatigue. One trained examiner performed baseline (BL) and follow-up (FU) assessments (FU1 after a standardized fatiguing exercise, FU2 after rest) over a single day. EDSS score change of ?1 point if BL EDSS score was <5.5 or of ?0.5 point if BL EDSS score was ?5.5 were considered clinically meaningful. Results. In progressive MS subtypes, WD decreased at FU1, but recovered at FU2, more so in secondaryprogressive MS subgroup with the highest BL EDSS score. Although BL EDSS scores (median, 5.0; range 4.0-6.5) and FS remained relatively stable over repeated assessments in the total group, a clinically meaningful transitory post-exercise EDSS score increase was observed in three patients with progressive MS. Conclusion. WD seems to be more influenced by fatigability than the total EDSS score, more so in patients with progressive MS and higher disability. WD should be assessed after rest and this strategy should be implemented into protocols of clinical trials recruiting patients with progressive MS phenotypes.
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Alonso, Ricardo N., Maria B. Eizaguirre, Berenice Silva, et al. "Brain Function Assessment of Patients with Multiple Sclerosis in the Expanded Disability Status Scale." International Journal of MS Care 22, no. 1 (2020): 31–35. http://dx.doi.org/10.7224/1537-2073.2018-084.
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Abstract Background: There is no consensus regarding assessment of the brain function functional system (FS) of the Expanded Disability Status Scale (EDSS) in patients with multiple sclerosis (MS). We sought to describe brain function FS assessment criteria used by Argentinian neurologists and, based on the results, propose redefined brain function FS criteria. Methods: A structured survey was conducted of 113 Argentinian neurologists. Considering the survey results, we decided to redefine the brain function FS scoring using the Brief International Cognitive Assessment for MS (BICAMS) battery. For 120 adult patients with MS we calculated the EDSS score without brain function FS (basal EDSS) and compared it with the EDSS score after adding the modified brain function FS (modified EDSS). Results: Of the 93 neurologists analyzed, 14% reported that they did not assess brain function FS, 35% reported that they assessed it through a nonstructured interview, and the remainder used other tools. Significant differences were found in EDSS scores before and after the inclusion of BICAMS (P &lt; .001). Redefining the brain function FS, 15% of patients modified their basal EDSS score, as did 20% of those with a score of 4.0 or less. Conclusions: The survey results show the importance of unifying the brain function FS scoring criteria in calculating the EDSS score. While allowing more consistent brain function FS scoring, including the modified brain function FS led to a change in EDSS score in many patients, particularly in the lower range of EDSS scores. Considering the relevance of the EDSS for monitoring patients with MS and for decision making, it is imperative to further validate the modified brain function FS scoring.
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Cheng, E. M., R. D. Hays, L. W. Myers, G. W. Ellison, M. Beckstrand, and B. G. Vickrey. "Factors related to agreement between self-reported and conventional Expanded Disability Status Scale (EDSS) scores." Multiple Sclerosis Journal 7, no. 6 (2001): 405–10. http://dx.doi.org/10.1177/135245850100700610.
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Background: Although the Expanded Disability Status Scale (EDSS) remains a widely used scale for evaluating impairments in people with multiple sclerosis (MS), EDSS assessments are infeasible in certain situations. A self-administered version of the EDSS would be potentially usefulif it yielded similar results as the conventional physician-based version. Methods: We developed a self-administered patient questionnaire to obtain ratings of neurologic impairments, and developed algorithms to estimate EDSS scores. We mailed the questionnaires to all new consecutive patients scheduled to be seen at an MS clinic. Questionnaires were completed prior to the visit, and traditional EDSS ratings were made by one of two neurologists at the visit. One hundred and forty-six pairs of patient questionnaires and physician EDSS assessments were obtained. Results: Kappa values for agreement between the physician's EDSS scores and the questionnaire-derived scores were 0.13 (for exact agreement), 0.39 (+0.5 EDSS steps), and 0.56 (+1.0 EDSS steps). A scatterplot showed that agreement was best at EDSS scores 53.0 and 45.0. Better agreement was obtained when patients had a higher level of education, and when the physician was more certain of the diagnosis of MS. Conclusions: While the self-assessed EDSS scores do not agree highly enough to take the place of conventional EDSS scores, they may be sufficient for MS trial screening or for assessing outcomes across broad categories of disability.
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Barkhof, F. "MRI in multiple sclerosis: correlation with expanded disability status scale (EDSS)." Multiple Sclerosis 5, no. 4 (1999): 283–86. http://dx.doi.org/10.1191/135245899678846221.
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Baldassari, Laura E., Amber R. Salter, Erin E. Longbrake, Anne H. Cross, and Robert T. Naismith. "Streamlined EDSS for use in multiple sclerosis clinical practice: Development and cross-sectional comparison to EDSS." Multiple Sclerosis Journal 24, no. 10 (2017): 1347–55. http://dx.doi.org/10.1177/1352458517721357.
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Background: The Expanded Disability Status Scale (EDSS) is the standard measure of disability in multiple sclerosis clinical trials. The EDSS has limited application in the clinical setting due to required completion time and scoring complexity. Systematically recording an objective, simplified, less time-intensive, and neurologist-derived disability score would be beneficial for patient care. Objective: To develop and validate a streamlined version of the Expanded Disability Status Scale (sEDSS) for clinical monitoring. Methods: The EDSS was modified by eliminating maneuvers with no impact on function, consolidating redundancies, and simplifying scoring. This sEDSS was refined and preliminarily validated using a pilot cohort of 102 patients. Subsequently, the sEDSS was retrospectively validated using 968 patients from the CombiRx trial. We evaluated correlation and agreement between each functional system as well as the overall sEDSS and EDSS. Results: The sEDSS correlated strongly with the EDSS, both overall (Spearman’s rho = 0.93) and for each functional system (Spearman’s rho 0.65–0.97). Correlation was slightly lower for functional systems where scoring was modified for consolidation and simplification. Conclusion: The sEDSS had strong agreement and correlation with the existing EDSS and can provide a useful measure of disability in clinical practice.
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Janssens, A. CJW, P. A. van Doorn, J. B. de Boer, et al. "A nxiety and depression influence the relation between disability status and quality of life in multiple sclerosis." Multiple Sclerosis Journal 9, no. 4 (2003): 397–403. http://dx.doi.org/10.1191/1352458503ms930oa.
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Disability status, depression and anxiety are important determinants of quality of life (Q oL) in patients with multiple sclerosis (MS). We investigated whether anxiety and depression influence the relation between disability status and Q oL in our cohort of recently diagnosed patients. Disability status [Expanded Disability Status Scale (EDSS)], anxiety and depression [Hospital A nxiety and Depression Scale (HADS)], and Q oL (SF-36) were prospectively obtained in 101 MS patients. The relation between EDSS and SF-36 scales was examined using regression analyses, without and with adjustment for anxiety and depression. Interaction effects were investigated by comparing the relation between EDSS and Q oL in patients with high and low anxiety and depression. In the unadjusted analyses, EDSS was significantly related to all SF-36 physical and mental health scales. A fter adjustment for anxiety and depression, EDSS was significantly related only to the SF-36 physical functioning, role-physical functioning and bodily pain scales. The relation between EDSS and these SF-36 scales was consistently higher in patients with more symptoms of anxiety or depression, suggesting that anxiety and depression strengthened the association of EDSS in these SF-36 physical health scales. A fter adjustment for anxiety and depression, EDSS was not significantly related to the SF-36 mental health scales and the general health scale. This finding is compatible with the hypothesis that anxiety and depression are intermediate factors in the association of EDSS with these SF-36 scales. Screening for symptoms of anxiety and depression is recommended in studies that use Q oL as an outcome measure of treatment or intervention efficacy.
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Bowen, James, Laura Gibbons, Ann Gianas, and George H. Kraft. "Self-administered Expanded Disability Status Scale with functional system scores correlates well with a physician-administered test." Multiple Sclerosis Journal 7, no. 3 (2001): 201–6. http://dx.doi.org/10.1177/135245850100700311.
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Background: Patient-administered measures are needed to assess disability cost-effectively in large epidemiological studies. Setting: An outpatient clinic in a large multiple sclerosis center. Methods: A self-administered EDSS questionnaire was developed (EDSS-S). Consecutive patients with clinically definite multiple sclerosis completed the EDSS-S (n=95). During the same visit, a physician completed an EDSS (EDSS-P). Scores below 4.0 were determined using functional system (FS) scores. Scores above 4.0 were calculated by two methods, using gait alone and using gait and functional system scores combined. Results: EDSS-P scores ranged from 0-9.5 (mean 5.1, median 5.0, 78% female, age 17-78, mean age 45). Mean EDSS-P, EDSS-S and intraclass correlation coefficients of agreement were: EDSS using ambulation alone (4.6, 5.1, 0.89), EDSS using ambulation and FS scores (4.6, 5.3, 0.87), bowel/bladder FS scores (1.6, 1.7, 0.79), pyramidal FS scores (2.1, 2.4, 0.67), sensory FS scores (1.6, 2.1, 0.60), cerebellar FS scores (1.1, 1.6, 0.55), brainstem FS scores (0.5, 1.2, 0.45), vision FS scores (1.9, 1.3, 0.38), cerebral FS scores (0.6, 2.3, 0.27). Conclusions: Very good correlation was seen between patient and physician scores for EDSS and the bowel/bladder FS score. Four other FS scores correlated moderately. In general, patients scored themselves more disabled than physicians.
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Cao, Hua, Laurent Peyrodie, Samuel Boudet, et al. "Expanded Disability Status Scale (EDSS) estimation in multiple sclerosis from posturographic data." Gait & Posture 37, no. 2 (2013): 242–45. http://dx.doi.org/10.1016/j.gaitpost.2012.07.011.
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Laptikultham, S. L., and P. D. Dusitanond. "PO10-TU-74 Simplified expanded disability status scale (EDSS) table and multiple sclerosis." Journal of the Neurological Sciences 285 (October 2009): S216. http://dx.doi.org/10.1016/s0022-510x(09)70823-8.
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Cao, Hua, Laurent Peyrodie, Olivier Agnani, Fabrice Cavillon, Patrick Hautecoeur, and Cécile Donzé. "Evaluation of an Expanded Disability Status Scale (EDSS) modeling strategy in multiple sclerosis." Medical & Biological Engineering & Computing 53, no. 11 (2015): 1141–51. http://dx.doi.org/10.1007/s11517-015-1383-7.
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D’Souza, Marcus, Özgür Yaldizli, Roland John, et al. "Neurostatus e-Scoring improves consistency of Expanded Disability Status Scale assessments: A proof of concept study." Multiple Sclerosis Journal 23, no. 4 (2016): 597–603. http://dx.doi.org/10.1177/1352458516657439.
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Background: To improve the consistency of standardized Expanded Disability Status Scale (EDSS) assessments, an electronic data capture tool and analysis tool was developed, Neurostatus e-Scoring (NESC). This tool allows real-time feedback by comparing entries with established scoring rules. Objective: To test whether using NESC reduces inconsistencies as compared to the paper-and-pencil version of the Expanded Disability Status Scale (pEDSS). Methods: In all, 100 multiple sclerosis (MS) patients were assessed in random order on the same day by pairs of neurologists, one using pEDSS and one NESC. We compared inter-rater reliability and frequency of inconsistencies in Neurostatus subscores, functional system (FS) scores, ambulation and EDSS steps. Results: Inconsistencies of any type were more likely to occur when using pEDSS (mean odds ratio (95% confidence interval (CI)) = 2.93 (1.62; 5.29)). This was also the case for FS score inconsistencies (2.54 (1.40; 4.61)) and more likely for patients in the lower EDSS range (⩽3.5 vs >3.5) (5.32 (1.19; 23.77)). Overall, inter-rater agreement for the assessed Neurostatus subscores was high (median and inter-quartile range = 0.84 (0.73, 0.81)). Conclusion: Our data provide class II evidence that the use of NESC increases consistency of standardized EDSS assessments, and may thus have the potential to decrease noise and increase power of MS clinical trials.
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Twork, Sabine, Susanne Wiesmeth, Milena Spindler, et al. "Disability status and quality of life in multiple sclerosis: non-linearity of the Expanded Disability Status Scale (EDSS)." Health and Quality of Life Outcomes 8, no. 1 (2010): 55. http://dx.doi.org/10.1186/1477-7525-8-55.
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Ayatollahi, P., S. Nafissi, MR Eshraghian, H. Kaviani, and A. Tarazi. "Impact of depression and disability on quality of life in Iranian patients with multiple sclerosis." Multiple Sclerosis Journal 13, no. 2 (2007): 275–77. http://dx.doi.org/10.1177/1352458506070960.
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Multiple sclerosis (MS) can influence all aspects of a patient's health. This study determines the main factors affecting quality of life (QoL) in Iranian MS patients. QoL (Multiple Sclerosis Impact Scale; MSIS-29), disability (Expanded Disability Status Scale; EDSS) and depression (Beck Depression Inventory; BDI) were assessed in 106 MS patients. EDSS, clinical course and MS duration significantly correlated with physical MSIS-29. Depression highly correlated with both physical and psychological MSIS-29. Regression analyses showed that depression and EDSS predicted physical health. Psychological health was predicted by depression. These findings highlight that depression and physical disability strongly influence QoL in Iranian MS patients. Multiple Sclerosis 2007; 13: 275–277. http://msj.sagepub.com
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Kale, Nilufer, Setty Magana, Jale Agaoglu, and Osman Tanik. "Assessment of autonomic nervous system dysfunction in multiple sclerosis and the association with clinical disability." Neurology International 1, no. 1 (2009): 4. http://dx.doi.org/10.4081/ni.2009.e4.
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Background: Recent studies have reported autonomic dysfunction (AD) in multiple sclerosis (MS), bladder and/or bowel dysfunction, orthostatic hypotension, and cardiac adaptation disorders have been observed in a wide range (15-80%). The primary aim of this study is to investigate the frequency and association of AD in MS patients, assessed by sympathetic skin reaction (SSR) and a symptoms questionnaire. The secondary aims of this study are to study the association of AD and disease disability assessed by expanded disability status scale (EDSS), as well as disease duration. Design and Methods: 100 clinically definite MS patients were evaluated for ANS dysfunction by use of an autonomic symptoms questionnaire and SSR testing. The relationship between these methods, AD and disease-related parameters, such as the expanded disability status scale (EDSS) and disease duration were all evaluated. Results: 65% of the patients presented with AD and 29% of these patients had abnormal SSR results. MS patients with high EDSS values (EDSS >4) and longer disease duration were more likely to have ANS dysfunction (p less than 0.0001). Conclusions. ANS dysfunction is not uncommon in CDMS patients and thus noninvasive investigations of AD are warranted to optimize AD evaluation and disease management.
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Rojas, Juan Ignacio, Liliana Patrucco, Cristina Besada, Laura Bengolea, and Edgardo Cristiano. "Brain atrophy at onset and physical disability in multiple sclerosis." Arquivos de Neuro-Psiquiatria 70, no. 10 (2012): 765–68. http://dx.doi.org/10.1590/s0004-282x2012001000003.
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The aim of this study was to investigate if brain atrophy in multiple sclerosis (MS) patients during the disease onset predicts long term disability. METHODS: MS patients with follow-up time of at least 7 years from disease onset and with baseline and second magnetic resonance 12 months later were included to measure brain atrophy. Expanded Disability Status Scale (EDSS) was categorized in three groups, EDSS=0, EDSS=1 and 2.5 and EDSS>2.5, and used as disability measure. RESULTS: Twenty-six patients were included. Mean atrophy during the first year in patients that reached an EDSS≥3 was -0.76±0.45 %, in patients with an EDSS between 1 and 2.5 was -0.59±0.56, while in patients with an EDSS of 0 it was -0.38±0.42 (p=0.003). DISCUSSION: Brain atrophy rates during the first year of disease were predictive of disease progression in our population.
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Amato, Maria Pia, and Giuseppina Ponziani. "Quantification of impairment in MS: discussion of the scales in use." Multiple Sclerosis Journal 5, no. 4 (1999): 216–19. http://dx.doi.org/10.1177/135245859900500404.
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Accurate, efficient measurement of disease status has become a key issue in MS clinical practice and research. Despite some perceived problems, the Expanded Disability Status Scale (EDSS) remains the most widely used comprehensive measure of impairment. There is also a place for more restricted scales of impairment which focus on some aspects of neurological function in more detail than the EDSS e.g. measures of ambulation, arm function and cognitive function. Improvements in scales of impairment in the future is likely to result from the use of more quantitative tests of selected components of the neurological examination.
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Harding, Katharine E., Mark Wardle, Robert Carruthers, et al. "Socioeconomic status and disability progression in multiple sclerosis." Neurology 92, no. 13 (2019): e1497-e1506. http://dx.doi.org/10.1212/wnl.0000000000007190.
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ObjectiveTo examine the association between socioeconomic status (SES) and disability outcomes and progression in multiple sclerosis (MS).MethodsHealth administrative and MS clinical data were linked for 2 cohorts of patients with MS in British Columbia (Canada) and South East Wales (UK). SES was measured at MS symptom onset (±3 years) based on neighborhood-level average income. The association between SES at MS onset and sustained and confirmed Expanded Disability Status Scale (EDSS) 6.0 and 4.0 and onset of secondary progression of MS (SPMS) were assessed using Cox proportional hazards models. EDSS scores were also examined via linear regression, using generalized estimating equations (GEE) with an exchangeable working correlation. Models were adjusted for onset age, sex, initial disease course, and disease-modifying drug exposure. Random effect models (meta-analysis) were used to combine results from the 2 cohorts.ResultsA total of 3,113 patients with MS were included (2,069 from Canada; 1,044 from Wales). A higher SES was associated with a lower hazard of reaching EDSS 6.0 (adjusted hazard ratio [aHR] 0.90, 95% confidence interval [CI] 0.89–0.91), EDSS 4.0 (aHR 0.93, 0.88–0.98), and SPMS (aHR 0.94, 0.88–0.99). The direction of findings was similar when all EDSS scores were included (GEE: β = −0.13, −0.18 to −0.08).ConclusionsLower neighborhood-level SES was associated with a higher risk of disability progression. Reasons for this association are likely to be complex but could include factors amenable to modification, such as lifestyle or comorbidity. Our findings are relevant for planning and development of MS services.
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Bosma, Libertje VAE, Jolijn J. Kragt, Dirk L. Knol, Chris H. Polman, and Bernard MJ Uitdehaag. "Clinical scales in progressive MS: predicting long-term disability." Multiple Sclerosis Journal 18, no. 3 (2011): 345–50. http://dx.doi.org/10.1177/1352458511419880.
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Background: To determine which short-term changes on clinical scales including the Expanded Disability Status Scale (EDSS), Timed 25-Foot Walk (T25FW), 9-Hole Peg test (9HPT) and Guy’s Neurological Disability Scale (GNDS) are most predictive of long-term outcome of disability as rated by the EDSS in progressive multiple sclerosis (MS). Methods: From a longitudinal database, all progressive patients, both primary (PP) and secondary (SP), were selected on the basis of at least two complete examinations being available within a time interval of 1–2 years (short-term change). All patients who fulfilled the selection criteria were invited for a third visit after an interval of at least 3 years (long-term outcome). We used ordinal logistic regression to see which early changes were most predictive of the long-term EDSS. Results: 181 patients fulfilled the selection criteria. Early change on EDSS and T25FW were the best predictors of long-term EDSS; both were significant predictors in a ‘single predictor’ model. Early EDSS change was a slightly stronger single predictor (R2 0.38, Wald χ2 42.65, p < 0.001) compared with early T25FW change (R2 0.27, Wald χ2 12.35, p < 0.001). Adding early T25FW change to early EDSS change in a ‘combined predictor’ model improved prediction ( p = 0.036). Conclusion: Both early change on EDSS and T25FW predict long-term EDSS with comparable strength. Early change on T25FW adds significant independent information and improves the prediction model with early EDSS change only. Therefore we support the use of early T25FW examinations in future clinical trials in progressive MS.
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Livne-Margolin, Moran, Itay Tokatly Latzer, Orit Pinhas-Hamiel, Gil Harari, and Anat Achiron. "Bodyweight Measures and Lifestyle Habits in Individuals with Multiple Sclerosis and Moderate to Severe Disability." Journal of Clinical Medicine 10, no. 10 (2021): 2083. http://dx.doi.org/10.3390/jcm10102083.
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Multiple sclerosis (MS) is a chronic disease marked by progressive disability and decreased mobility over time. We studied whether individuals with MS of higher disability levels will be more overweight/obese as a result of their immobility and/or recurrent steroid treatments. In a prospective study, 130 individuals with MS and significant disability were classified according to the Expanded Disability Status Scale (EDSS) score as belonging to four groups: EDSS 3.0–4.0 (n = 31, 24%), EDSS 4.5–5.5 (n = 24, 18%), EDSS = 6.0 (n = 44, 34%) and EDSS ≥ 6.5 (n = 31, 24%). Medical history, body mass index (BMI), waist circumference and the level of engagement in physical activity were obtained. The mean ± standard error age was 55.8 ± 0.5 years, disease duration 18.2 ± 1.0 years and EDSS score 5.5 ± 0.1. Disease duration, the number of steroid courses per disease duration, weight, BMI and physical activity did not differ according to the four disability groups. The mean waist circumference increased significantly with increased severity of EDSS, p = 0.03. Increased disability in individuals with MS was not correlated with disease duration, lifestyle habits or overweight/obesity. However, increased disability was associated with central obesity.
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Gray, OM, GV McDonnell, and SA Hawkins. "Tried and tested: the psychometric properties of the multiple sclerosis impact scale (MSIS-29) in a population-based study." Multiple Sclerosis Journal 15, no. 1 (2009): 75–80. http://dx.doi.org/10.1177/1352458508096872.
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Objective To investigate the psychometric properties of the Multiple Sclerosis Impact Scale (MSIS-29) and to assess the relationship between the Kurtzke Expanded Disability Status Scale and the physical and psychological parts of this score. Methods A population-based study identified cases with definite multiple sclerosis (MS) in the north-east region of Ireland. They were examined and completed the MSIS-29. Cases were classified as mild (Expanded Disability Status Score (EDSS) 0–3.0), moderate (EDSS 3.5–5.5), or severe (6.0–9.5) MS. Results The 248 participants (82 male, 166 female) had a mean age of 49.1 years (SD 12.4). EDSS ranged from 0 to 9.5 (median 6.0). Data quality was excellent (0.02% missing data), physical and psychological scores spanned the entire range with low floor and ceiling effects. Internal consistency was high (Cronbach’s alpha 0.97 – physical score, 0.93 – psychological score). The convergent validity of the physical impact score of the MSIS-29 with the Kurtzke EDSS was confirmed with a high Spearman’s rank coefficient correlation of 0.63 ( P = 0.01). Physical impact scores for mild, moderate, and severe disability as were statistically different at 25.9%, 48.0%, and 63.9%, respectively. Mean psychological score was non-significantly higher in the moderately disabled group at 47.4% compared with the severely disabled at 44.3% ( P = 0.58). Conclusions The MSIS-29 is an acceptable, reliable, and valid method of recording quality of life. A significant relationship between higher physical impact scores of the MSIS-29 and higher Kurtzke EDSS values suggests that is may be of use in clinical trials to monitor progression.
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Haase, Claus G., Michael Tinnefeld, Marc Lienemann, Reinhard E. Ganz, and Pedro M. Faustmann. "Depression and Cognitive Impairment in Disability-Free Early Multiple Sclerosis." Behavioural Neurology 14, no. 1-2 (2003): 39–45. http://dx.doi.org/10.1155/2003/843760.
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Cognitive and emotional capabilities were evaluated in 73 female patients with stable relapsing-remitting definite, and/or laboratory-supported multiple sclerosis (MS) and were compared with 32 matched healthy controls. Patients were categorized according to their score in the expanded disability status scale (EDSS) to either no (EDSS 0,n= 33) or few clinical signs (EDSS 1–2,n= 40) of MS without physical disability. Patients with EDSS > 0 were characterized by significantly (p These results indicate that depression may present as an early sign in MS followed by cognitive impairment, in particular visuo-spatial short-term memory, before physical disability appears. Neuropsychological tests as mentioned here could serve as early diagnostic tools to detect subtle disease progression and to initiate and monitor disease modifying therapies.Patients with EDSS > 0 were characterized by significantly (p< 0.001) higher scores on “von Zerssen’s“ depression scale, compared to controls. Patients with higher EDSS scores (1–2) showed significantly decreased performance with respect to the total score of Kimura’s Recurring-Figures-Test (p< 0.001), in addition. Regarding visuo-constructive functioning, patients with EDSS = 0 performed to a significantly lower level (p< 0.001), compared to controls.
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Zhang, J., E. Waubant, G. Cutter, JS Wolinsky, and D. Leppert. "Composite end points to assess delay of disability progression by MS treatments." Multiple Sclerosis Journal 20, no. 11 (2014): 1494–501. http://dx.doi.org/10.1177/1352458514527180.
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Background: The Expanded Disability Status Scale (EDSS) has low sensitivity and reliability for detecting sustained disability progression (SDP) in multiple sclerosis (MS) trials. Objective: This study evaluated composite disability end points as alternatives to EDSS alone. Methods: SDP rates were determined using 96-week data from the Olympus trial (rituximab in patients with primary progressive MS). SDP was analyzed using composite disability end points: SDP in EDSS, timed 25-foot walk test (T25FWT), or 9-hole peg test (9HPT) (composite A); SDP in T25FWT or 9HPT (composite B); SDP in EDSS and (T25FWT or 9HPT) (composite C); and SDP in any two (EDSS, T25FWT, and 9HPT) (composite D). Results: Overall agreements between EDSS and other disability measures in defining SDP were 66%−73%. Composite A showed similar treatment effect estimate versus EDSS alone with much higher SDP rates. Composite B, C, and D all showed larger treatment effect estimate with different or similar SDP rates versus EDSS alone. Using composite A (24-week confirmation only), B, C, or D could reduce sample sizes needed for MS trials. Conclusion: Composite end points including multiple accepted disability measures could be superior to EDSS alone in analyzing disability progression and should be considered in future MS trials.
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D’Souza, Marcus, Antti Heikkilä, Johannes Lorscheider, et al. "Electronic Neurostatus-EDSS increases the quality of expanded disability status scale assessments: Experience from two phase 3 clinical trials." Multiple Sclerosis Journal 26, no. 8 (2019): 993–96. http://dx.doi.org/10.1177/1352458519845108.
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Background: The Neurostatus-eEDSS is an electronic tool providing automated real-time feedback on inconsistencies of Neurostatus-EDSS calculations. Objective: To analyze the performance of the Neurostatus-eEDSS in two multicenter phase 3 multiple sclerosis (MS) trials. Methods: All assessments captured with the Neurostatus-eEDSS web service during a period of 2.5 years were analyzed. Results: Of the total 10,789 assessments, 40.1% had inconsistencies after first entry, reduced to 22.1% due to the real-time feedback. The entire checking process resulted in a change of the expanded disability status scale (EDSS) score in 14.8% of the assessments. Conclusion: The Neurostatus-eEDSS can increase consistency and reliability of EDSS assessments in clinical MS trials.
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Bosma, LVAE, JJ Kragt, L. Brieva, et al. "The search for responsive clinical endpoints in primary progressive multiple sclerosis." Multiple Sclerosis Journal 15, no. 6 (2009): 715–20. http://dx.doi.org/10.1177/1352458509102626.
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Objective To determine whether in primary progressive multiple sclerosis (PPMS) combining scores of Expanded Disability Status Scale (EDSS) with data from Timed 25-Foot Walk (T25FW) and 9-Hole Peg Test (9HPT) would produce a clinical endpoint that has a higher event rate than EDSS alone. Methods In a group of 161 PPMS patients, EDSS, T25FW, and 9HPT were performed at three time points over 2 years. We calculated how many patients showed clinically meaningful deterioration (or improvement) on individual and combined scales. We defined improvements on one scale with deterioration on the other as “opposing changes.” We investigated the possible effect of baseline disability on the definition of our endpoint by dividing the population into two subsets of patients determined by baseline EDSS level. Results On individual scales, event rates were highest on T25FW: 34% and 46% 1 year and 2 years after baseline. On a combination of two scales, at 1 year the event rate was highest on T25FW/9HPT (46%; with a high rate of opposing changes) and at 2 years on T25FW/EDSS (57%; with a lower rate of opposing changes). In both subsets, event rates were highest on T25FW and (at 2 years) on the combination of T25FW/EDSS. Conclusions T25FW has the highest event rate as a single scale, independent of baseline disability level. A term of 2 years turned out to be more meaningful to observe than 1 year. “Worsening on either T25FW or EDSS” is the most appropriate composite endpoint in this patient group.
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Jung, P., A. Beyerle, and U. Ziemann. "Multimodal evoked potentials measure and predict disability progression in early relapsing–remitting multiple sclerosis." Multiple Sclerosis Journal 14, no. 4 (2008): 553–56. http://dx.doi.org/10.1177/1352458507085758.
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In 37 patients with early relapsing–remitting multiple sclerosis (RRMS), a multimodal EP score (mEPS) and clinical scores (Expanded Disability Status Scale (EDSS) and multiple sclerosis functional composite (MSFC)) were obtained prospectively over 24 months. Changes in mEPS correlated with changes in EDSS (Spearman’s ρ = 0.69, p < 0.0001) and MSFC (ρ = –0.41, p < 0.02). Patients with relevant EDSS progression ( n = 7) showed stronger mEPS deterioration than clinically stable patients (10.8 ± 3.2 versus 1.3 ± 0.8, p < 0.005). Baseline mEPS was not significantly correlated with baseline EDSS but with EDSS after 24 months (ρ = 0.39, p < 0.02). The data suggest that serial mEPS measure and moderately predict clinically relevant disease activity in the therapeutically most relevant early stage of RRMS.
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Smolders, Joost. "Vitamin D and Multiple Sclerosis: Correlation, Causality, and Controversy." Autoimmune Diseases 2011 (2011): 1–3. http://dx.doi.org/10.4061/2011/629538.
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The last years, many studies reported associations between correlates of vitamin D exposure and several correlates of multiple sclerosis (MS) disease activity. This review discusses studies on vitamin D status, Expanded Disability Status Scale (EDSS) score, and relapse activity of MS. Furthermore, several considerations for intervention studies on vitamin D supplementation in MS are provided.
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Dobrakowski, Pawel, Agnieszka Machowska-Majchrzak, Beata Labuz-Roszak, Ewa Niewiadomska, and Krystyna Pierzchala. "Sexual Satisfaction in Fully Ambulatory People with Multiple Sclerosis: Does Disability Matter?" Behavioural Neurology 2020 (October 10, 2020): 1–9. http://dx.doi.org/10.1155/2020/8857516.
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Primary sexual dysfunctions (SD) are a direct result of neurological changes that affect the sexual response. Secondary SD result from the symptoms that do not directly involve nervous pathways to the genital system, such as bladder and bowel problems, fatigue, spasticity, or muscle weakness. Tertiary SD are the result of disability-related psychosocial and cultural issues that can interfere with sexual feelings and experiences. The aim of this study was to assess the sexual satisfaction (SS) in people with multiple sclerosis (PwMS) without significant mobility impairment and to estimate the influence of SD, the score on the Kurtzke Expanded Disability Status Scale (EDSS), lowered mood, and stress coping strategies on SS. Methods. 76 PwMS with the EDSS score<5.0 points were enrolled in the study. The subjects completed the Montgomery-Asberg Depression Scale (MADRS), the Coping Inventory for Stressful Situations (CISS), the Multiple Sclerosis Intimacy and Sexuality Questionnaire (MSISQ-19), and the Sexual Satisfaction Questionnaire (SSQ). Results. The level of SS in PwMS was not significantly lower compared to that of the general population. It correlated with the primary, secondary, and tertiary SD and lowered mood. However, it did not correlate with disability measured by the EDSS. Conclusions. The level of SS in PwMS with the EDSS score below 5.0 points was not significantly lower. SS depended on SD, lowered mood, and stress coping style, and it was not significantly related to the level of disability in patients with the EDDS score below 5.0.
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FELIPE, EDUARDO, MARIA FERNANDA MENDES, MARCO AURÉLIO MOREIRA, and CHARLES PETER TILBERY. "Análise comparativa entre duas escalas de avaliação clínica na esclerose múltipla: revisão de 302 casos." Arquivos de Neuro-Psiquiatria 58, no. 2A (2000): 300–303. http://dx.doi.org/10.1590/s0004-282x2000000200016.
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Muitas escalas neurológicas têm sido utilizadas para avaliar evolutivamente portadores da esclerose múltipla. O Expanded Disability Status Scale (EDSS) de Kurtzke ainda é a mais utilizada. Analisamos comparativamente a aplicação do EDSS e Neurologic Rating Scale (NRS), de Sipe e col. em 302 pacientes com forma definida de esclerose múltipla. Os resultados demonstram que o NRS foi mais sensível que o EDSS na detecção de alterações clínicas em 22,1% dos casos, sendo possivelmente mais sensível na caracterização de um novo surto. As variações do EDSS ocorrereram mais nos pacientes com EDSS de 36,0 e 3,5. Fazemos considerações sobre estes achados, sugerindo a aplicação de mais de uma escala clínica para avaliação dos pacientes nos estudos com novas drogas para tratamento da doença.
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Cheng, E. M., R. D. Hays, L. W. Myers, G. W. Ellison, M. Beckstrand, and B. G. Vickrey. "Factors related to agreement between self-reported and conventional Expanded Disability Status Scale (EDSS) scores." Multiple Sclerosis 7, no. 6 (2001): 405–10. http://dx.doi.org/10.1191/135245801701566989.
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Cao, Hua, Olivier Agnani, Laurent Peyrodie, and Cécile Donzé. "Automatic Assessment of Expanded Disability Status Scale (EDSS) in Multiple Sclerosis Using a Decision Tree." Engineering 05, no. 10 (2013): 566–69. http://dx.doi.org/10.4236/eng.2013.510b116.
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Drulovic, J., T. Riise, M. Nortvedt, T. Pekmezovic, and M. Manigoda. "Self-rated physical health predicts change in disability in multiple sclerosis." Multiple Sclerosis Journal 14, no. 7 (2008): 999–1002. http://dx.doi.org/10.1177/1352458508088917.
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Objective To examine whether self-rated physical health, as measured by the Physical Functioning Scale (PF) and the Role-physical Scale (RF) of the SF-36 Health Survey, could predict change in disability measured by the Expanded Disability Status Scale (EDSS) in patients with multiple sclerosis (MS) over a follow-up period of 3 years. Methods A group of 156 clinically definite MS patients (Poser criteria), who had never been treated with disease-modifying therapies, were recruited consecutively from an outpatient clinic setting at the Institute of Neurology, Belgrade. The self-rated physical health was measured by using PF and RF of the SF-36. Results At follow-up, 33 out of 156 patients (21%) had dropped out. The mean EDSS score had increased from 3.7 to 4.5. Multiple regression analyses using change in EDSS as the dependent variable and baseline scores of EDSS and RF as independent variables showed a significant effect for RF (standardized beta = –0.21). A similar but non-significant effect was found for PF. Dichotomizing change in disability according to clinically meaningful deterioration and using logistic regression, an odds ratio of 1.27 (95% confidence interval 1.01–1.62) was found for the smallest unit of change in the self-rated scale. This means that patients who rated their own physical health as poor had a higher increase in disability compared with patients with the same level of disability at baseline who rated their physical health better. Conclusions MS patients’ perception of their health comprises information predictive for disease development not included in the more objective measure of disability status.
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Patwardhan, M. B., D. B. Matchar, G. P. Samsa, D. C. McCrory, R. G. Williams, and T. T. Li. "Cost of multiple sclerosis by level of disability: a review of literature." Multiple Sclerosis Journal 11, no. 2 (2005): 232–39. http://dx.doi.org/10.1191/1352458505ms1137oa.
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We performed a review of the economic literature to identify what is known about the relationship between Expanded Disability Status Scale (EDSS) categories and cost of multiple sclerosis (MS). We sought cohort studies of patients with multiple sclerosis that described the costs attributed to each EDSS score and utilized specific inclusion criteria for the selection of 10 studies. We found that both direct and indirect costs rise continuously with increasing EDSS category, and this rise is qualitatively exponential. The rise in indirect costs appears at lower EDSS scores. The cost of a relapse occurring in any given EDSS category exceeds that associated with that particular EDSS category. Few studies comprehensively assessed the entire spectrum of the costs, and much of the literature is based on EDSS categories in coarse groupings. In spite of several variations between studies, one important conclusion that we can draw is that rise in cost is positively correlated to scores on the EDSS categories, and therefore agents with a capacity to prevent or arrest the rate of MS progression may affect the overall cost of MS.
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Hobart, J., N. Kalkers, F. Barkhof, B. Uitdehaag, C. Polman, and A. Thompson. "Outcome measures for multiple sclerosis clinical trials: relative measurement precision of the Expanded Disability Status Scale and Multiple Sclerosis Functional C omposite." Multiple Sclerosis Journal 10, no. 1 (2004): 41–46. http://dx.doi.org/10.1191/1352458504ms983oa.
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We compared the relative measurement precision (RMP) of the Expanded Disability Status Scale (EDSS) and the Multiple Sclerosis Functio nal C omposite (MSFC) for discriminating between groups of patients known to differ in their extent of multiple sclerosis (MS). A total of 133 patients were rated with the EDSS and MSFC and had magnetic resonance imaging (MRI) scans. Patients were grouped on the basis of MRI appearances (T1- and T2-weighted lesion loads, parenchymal and ventricular fractions - T1LL, T2LL, PF, VF, respectively) and RMP was determined using the method of group differences. For each MRI parameter, the total sample was arranged in ascending order of magnitude and divided into two, three, four and five similar sized groups. For each division (two, three, four or five groups), EDSS and MSFC scores for the groups were compared using parametric (paired samples t-tests, one-way A NOVA) and nonparametric (Wilcoxon’s rank-sum test, Kruskal -Wallis analysis of variance) statistical methods and RMP was estimated. The EDSS and MSFC were correlated substantially (r = -0.64). Relative to the MSFC, the EDSS had inferior measurement precision regardless of the number of groups into which the total sample was divided, or the statistical method. However, the RMP of the EDSS compared with the MSFC varied from 2% to 86%. Results suggest the MSC F is better than the EDSS for detecting differences between groups of patients, defined by these MRI markers of MS. However, the finding that both scales correlated weakly with MRI markers, indicated that they are limited as predicto rs of MS patho logy as defined by MRI. A n explanatio n for this well-established clinical -MRI paradox is that rating scales and MRI measure fundamentally different manifestations of MS.
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Bove, Riley, Carolyn Bevan, Elizabeth Crabtree, et al. "Toward a low-cost, in-home, telemedicine-enabled assessment of disability in multiple sclerosis." Multiple Sclerosis Journal 25, no. 11 (2018): 1526–34. http://dx.doi.org/10.1177/1352458518793527.
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Background: Remote assessment of neurological disability in people with multiple sclerosis (MS) could improve access to clinical care and efficiency of clinical research. Objective: To develop and validate a telemedicine-based MS disability examination that does not require an in-home examiner. Methods: Adults with MS were recruited after a standardized in-person Expanded Disability Status Scale (EDSS) evaluation, and within 1 week underwent a blinded televideo-enabled EDSS examination with a different clinician. EDSS and tele-EDSS scores were compared. Results: Overall, 41 adults participated (mean (standard deviation (SD)) age: 47.0 years (11.6); median EDSS: 2 (range: 0–7)); 37 required no in-home assistance for the tele-EDSS evaluation (e.g. help positioning camera). Mean difference between EDSS and tele-EDSS was 0.34 (95% confidence interval (CI): 0.07–0.61). For 88% of evaluations, tele-EDSS and EDSS scores were within 1 point (similar to reported in-person inter-rater differences). Unweighted kappa for agreement within 0.5 point was 0.72. Correlation for individual functional systems (FS) ranged from modest (vision: 0.37) to high (bowel/bladder: 0.79). Overall correlation between EDSS and tele-EDSS was 0.89 ( p < 0.0001); and 0.98 ( p < 0.0001) at EDSS range: 4–7. Conclusion: In this proof of principle study, disability evaluation in mild to moderate MS is feasible using telemedicine without an aide at the patient’s location.
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Casado, V., L. Romero, L. Gubieras, et al. "An approach to estimating the intangible costs of multiple sclerosis according to disability in Catalonia, Spain." Multiple Sclerosis Journal 13, no. 6 (2007): 800–804. http://dx.doi.org/10.1177/1352458506073480.
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Multiple sclerosis (MS) is a chronic demyelinating disease, which represents a great economic burden to society. Cost-of-illness studies of MS tend to underestimate the intangible costs related to pain, anxiety and helplessness. The purpose of this study was to estimate the intangible costs of MS, and determine whether these costs increase as disability progresses. We studied 211 consecutive patients with MS who attended our MS unit. Patients mean age was 41.6 (SD: 10.7) years, 69% were female, and their mean Expanded Disability Status Scale (EDSS) score was 2.47 (SD: 2.05). Quality-of-life was measured with the EuroQoL visual analogue scale. Quality-adjusted life year (QALY) was calculated for each patient. Patients were grouped into five disability stages according to their EDSS, and QALY was compared between patients and a group of healthy controls matched by age and sex. A benchmark value was ascribed to each QALY lost, and the intangible costs per patient-year were calculated as 0 (EDSS =0), 1100 (EDSS =1-3), 8250 (EDSS =3.5-5.5), 9900 (EDSS =6-7) and 11 000 (EDSS >7.5). Sensitivity analysis showed a similar progression of costs. We conclude that intangible costs are relevant in MS, especially when disability increases. Although the method to calculate the costs remains controversial, we consider that they should be included in cost analysis of MS. Multiple Sclerosis 2007; 13: 800-804. http://msj.sagepub.com
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Cavallari, Michele, Miklos Palotai, Bonnie I. Glanz, et al. "Fatigue predicts disease worsening in relapsing-remitting multiple sclerosis patients." Multiple Sclerosis Journal 22, no. 14 (2016): 1841–49. http://dx.doi.org/10.1177/1352458516635874.
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Background: It is unclear whether fatigue is a consequence or a predictive trait of disease worsening. Objective: To investigate the predictive value of fatigue toward conversion to confirmed moderate–severe disability in patients with relapsing-remitting multiple sclerosis (RRMS). Methods: We retrospectively selected from the Comprehensive Longitudinal Investigations in MS at the Brigham and Women’s Hospital (CLIMB) study cohort RRMS patients who converted to confirmed (⩾2 years) Expanded Disability Status Scale (EDSS) score ⩾3 within a follow-up period ⩾3 years. We contrasted the Modified Fatigue Impact Scale (MFIS) score of 33 converters, obtained at least 1 year before conversion to EDSS ⩾3, with that of 33 non-converter RRMS patients matched for baseline characteristics. Results: Total MFIS score was higher in converter versus non-converter MS patients (median 37 vs 13; p < 0.0001). EDSS and Center for Epidemiological Studies Depression scale (CES-D) scores were also higher in the converters (median EDSS 1.5 vs 0, p < 0.0001; median CES-D 30 vs 24, p < 0.0001) and were both associated with MFIS score (EDSS: rho = 0.42, p = 0.0005; CES-D: rho = 0.72, p < 0.0001). After adjusting for EDSS and CES-D in multivariate analysis, MFIS remained a significant predictor of subsequent conversion to confirmed EDSS ⩾3. Conclusion: Fatigue is a promising indicator of risk for conversion to confirmed moderate–severe disability in RRMS patients.
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Kragt, J. J., J. M. Nielsen, F. AH van der Linden, B. MJ Uitdehaag, and C. H. Polman. "How similar are commonly combined criteria for EDSS progression in multiple sclerosis?" Multiple Sclerosis Journal 12, no. 6 (2006): 782–86. http://dx.doi.org/10.1177/1352458506070931.
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Introduction Measuring disease progression is an important aspect of multiple sclerosis (MS) clinical trials. Commonly applied disability endpoints include time to clinically meaningful Expanded Disability Status Scale (EDSS) change, or the number of patients in whom such a change has occurred. Typically, clinically meaningful EDSS change has been defined as a change of 1.0 point on Kurtzke’s EDSS in patients with an entry EDSS score of 5.5 or lower, or 0.5 point in patients with a higher EDSS score. Our goal was to evaluate whether these changes can be considered as similar. Therefore, we compared EDSS changes to corresponding changes in the Guy’s Neurological Disability Scale (GNDS), which is a measure of patient perceived disability, and the Multiple Sclerosis Functional Composite (MSFC), which is an examination-based quantitative scoring of neurological impairment. Methods From a large longitudinal database, we selected two groups of patients with a clinically meaningful change in EDSS score according to the usual criteria: patients with EDSS change]/1.0 for baseline EDSS 5/5.5 and patients with EDSS change]/0.5 for baseline EDSS]/6.0. We compared changes in GNDS sum score and in MSFC score between both groups. Results In the group with baseline EDSS]/6.0, GNDS and MSFC changes were higher than in patients with baseline EDSS 5/5.5. The difference in change was 1.00 (95% confidence interval (CI): / 0.35 to 2.36) for the GNDS and 0.412 (95% CI: 0.300-0.525) for the MSFC. Conclusion Our results indicate that a 0.5 point EDSS change in patients with baseline EDSS / 6.0 cannot be considered equal to a 1.0 point change in patients with baseline EDSS 5/5.5.
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Cohen, Y. C., S. Hassin-Baer, L. Olmer, et al. "MS-CANE: a computer-aided instrument for neurological evaluation of patients with multiple sclerosis: enhanced reliability of expanded disability status scale (EDSS) assessment." Multiple Sclerosis Journal 6, no. 5 (2000): 355–61. http://dx.doi.org/10.1177/135245850000600511.
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Kurtzke's EDSS remains the most widely-used measure for clinical evaluation of MS patients. However, several studies have demonstrated the limited reliability of this tool. We introduce a computerized instrument, MS-CANE (Multiple Sclerosis Computer-Aided Neurological Examination), for clinical evaluation and follow up of patients with multiple sclerosis (MS) and to compare its reliability to that of conventional Expanded Disability Status Scale (EDSS) assessment. We developed a computerized interactive instrument, based on the following principles: structured gathering of neurological findings, reduction of compound notions to their basic components, use of precise definitions, priority setting and automated calculations of EDSS and functional systems scores. An expert panel examined the consistency of MS-CANE with Kurtzke's specifications. To determine the effect of MS-CANE on the reliability of EDSS assessment, 56 MS patients underwent paired conventional EDSS and MS-CANE-based evaluations. The inter-observer agreement in both methods was determined and compared using the kappa statistic. The expert panel judged the tool to be compatible with the basic concepts of Kurtzke's EDSS. The use of MS-CANE increased the reliability of EDSS assessment: Kappa statistic was found to be 0.42 (i.e. moderate agreement) for conventional EDSS assessment versus 0.69 (i.e. substantial agreement) for MS-CANE (P=0.002). We conclude that the use of this tool may contribute towards a standardized and reliable assessment of EDSS. Within clinical trials, this could increase the power to detect effects, thus reducing trial duration and the cohort size required.
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Tomassini, Valentina, Fulvia Fanelli, Luca Prosperini, Raffaella Cerqua, Paola Cavalla, and Carlo Pozzilli. "Predicting the profile of increasing disability in multiple sclerosis." Multiple Sclerosis Journal 25, no. 9 (2018): 1306–15. http://dx.doi.org/10.1177/1352458518790397.
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Background: Effective therapeutic strategies to preserve function and delay progression in multiple sclerosis (MS) require early recognition of individual disease trajectories. Objectives: To determine the profiles of disability evolution, identify their early predictors and develop a risk score of increasing disability. Methods: We analysed demographic, clinical and magnetic resonance imaging (MRI) data from patients with relapsing MS, Expanded Disability Status Scale (EDSS) score of 3.0–4.0 and follow-up ≥ 2 years. Attaining EDSS = 6.0 defined increasing disability; relapses and/or MRI defined disease activity. Results: In total, 344 out of 542 (63.5%) patients reached EDSS ≥ 6.0; of these, 220 (64.0%) showed disease activity. In patients with activity, the number of relapses before reaching EDSS 3.0–4.0 predicted increasing disability; age > 45 at baseline predicted increasing disability without activity. Combining age and number of relapses increased the risk of and shortened the time to EDSS = 6.0. Conclusion: Increasing disability is frequently associated with persistent activity. The high number of relapses identifies early those patients worsening in the presence of activity. Age predicts increasing disability in the absence of activity. The presence of both factors increases the risk of developing severe disability. As this study likely describes the transition to progression, our findings contribute to improving patient management and stratification in trials on progressive MS.
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Scott, Thomas, Ping Wang, Xiaojun You, Monica Mann, and Bjørn Sperling. "Relationship between Sustained Disability Progression and Functional System Scores in Relapsing-Remitting Multiple Sclerosis: Analysis of Placebo Data from Four Randomized Clinical Trials." Neuroepidemiology 44, no. 1 (2015): 16–23. http://dx.doi.org/10.1159/000369621.
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Background: The Expanded Disability Status Scale (EDSS), based on different functional system scores (FSS), remains the most frequently used disability assessment in relapsing-remitting multiple sclerosis (RRMS). In this analysis, we evaluated the relationship between sustained disability progression, measured by EDSS, and simultaneous changes in individual FSS domains. Methods: A post hoc analysis was performed on data from placebo-treated RRMS patients from four large, randomized, multicenter, phase 3 clinical trials. Sustained disability progression was defined as a ≥1.0-point EDSS score increase over a ≥3- or ≥6-month period. Simultaneous sustained disability progression and worsening of individual FSS domains was analyzed. Results: The majority of patients experienced sustained disability progression and simultaneous worsening of ≥1 FSS domain, with ≥1-point worsening in the pyramidal domain being most frequently associated with sustained disability progression (in 31-51% of patients), followed by ≥1-point worsening in the cerebellar (35-41% of patients) and sensory (31-45% of patients) domains. Conclusion: The key FSS components correlating with sustained disability progression, measured by EDSS, appear to be pyramidal, cerebellar, and sensory. In this analysis, the simultaneous worsening of consistent FSS domains confirms the validity and reliability of the use of sustained EDSS progression as a measure of disability progression.
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Muniz, André Luiz, Waldyr Rodrigues Jr., Silvane B. Santos, et al. "Association of cytokines, neurological disability, and disease duration in HAM/TSP patients." Arquivos de Neuro-Psiquiatria 64, no. 2a (2006): 217–21. http://dx.doi.org/10.1590/s0004-282x2006000200009.
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OBJECTIVE: To identify clinical and immunological markers associated with HTLV-I associated myelopathy/tropical spastic paraparesis (HAM/TSP). METHOD: 237 HTLV-I infected individuals were clinically assessed. They were classified according to the Expanded Disability Status Scale (EDSS) and Osame’s Motor Disability Score (OMDS). Cytokine levels were determined in HTLV-I seropositive individuals. RESULTS: 37 patients had HAM/TSP. There was a correlation between the degrees of disability assessed by both scales. There was also a correlation between the duration of HAM/TSP and the severity of disability assessed by either EDSS or OMDS. Higher levels of IFN-gamma were detected in unstimulated peripheral blood mononuclear cells (PBMC) from HAM/TSP patients as compared with HTLV-I carriers. CONCLUSION: This study shows the validity of the neurological scales to classify the degree of neurological disability in HTLV-I carriers and suggests a progressive behavior of HAM/TSP. This study also shows that IFN-gamma in PBMC supernatants are markers of HAM/TSP.
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Zhang, Jiameng, Emmanuelle Waubant, Gary Cutter, Jerry S. Wolinsky, and Robert Glanzman. "EDSS variability before randomization may limit treatment discovery in primary progressive MS." Multiple Sclerosis Journal 19, no. 6 (2012): 775–81. http://dx.doi.org/10.1177/1352458512459685.
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Background: Baseline Expanded Disability Status Scale (EDSS) is usually based on a single measurement. Here we evaluated whether using a baseline EDSS derived from two pre-treatment measurements improves the detection of progression events and the ability to demonstrate a therapeutic effect in delaying MS disability progression. Methods: Real data from OLYMPUS, a phase II/III randomized, placebo-controlled trial of rituximab in patients with primary progressive multiple sclerosis (PPMS), as well as simulated data were analyzed. Several definitions of baseline EDSS were used to capture sustained disability progression (SDP) events. Variations in the EDSS were estimated by linear mixed-effect models. Results: Selecting the higher of two baseline EDSS scores lowered the number of SDP events in both treatment groups, so decreasing sensitivity, and reduced the number of false SDP events, so increasing specificity. Conversely, selecting the lower of two baseline scores increased sensitivity but decreased specificity. Increased power (~7% based on the simulation study) was observed when the average of screening and Week 0 EDSS scores was used for baseline. Conclusion: Baseline EDSS derived from two pre-treatment EDSS measurements may enhance the ability of detecting a therapeutic effect in slowing disability progression in PPMS. This strategy could be implemented in future clinical trials of patients with MS.