Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Hello Everyone, I came across this abstract and thought of its implications for LDN and those of you on LDN that have neuros acknowledging your improvements. EDSS neuro exam scores do not accurately reflect disability Msers are actually experiencing as scored by GNDS. In other words when our neuros run us through our paces, these exams do not give them a precise assessment of how we're doing because they don`t measure everything we're perceiving disabilitywise. Thinking optimistically, if your neuros are acknowledging improvements based on your EDSS scoring; rather than just a passing `glad you're doing well' kind of thing based on what you relay; would that not clearly document measureable improvement? The conclusion is very telling in my view, and all the more reason neuros should be paying more attention to what patients report than they seem too regardless of any scores. My Best to All, Lesa JNNP Online http://jnnp.bmjjournals.com/cgi/content/full/74/4/439/DC1/1 One year changes in disability in multiple sclerosis: neurological examination compared with patient self report E L J Hoogervorst, M J Eikelenboom, B M J Uitdehaag, C H Polman Objective: To characterise prospectively the relation between one year changes in neurologist rating of neurological exam abnormalities as measured by the Expanded Disability Status Scale (EDSS) and changes in patient perceived disability as measured by the Guy's Neurological Disability Scale (GNDS) in patients with multiple sclerosis. Methods: Two hundred and fifty patients with MS were recruited at an outpatient clinic. Disability at baseline and one year follow-up was assessed using the EDSS and GNDS. Correlations between change in EDSS, GNDS-sum score, Functional Systems and GNDS subcategories were studied as well as the significance of changes in EDSS associated with changes in perceived disability. Results: The correlation between one year changes in EDSS versus GNDS was substantially lower (0.19) than cross-sectional correlations between EDSS and GNDS either at baseline (0.62) or at follow-up (0.77). Notably, changes in functional system scores that are based on neurological examination are poorly or not at all correlated with changes in disability as perceived by the patient. Analysing the impact of a significant worsening in EDSS-score, a commonly applied outcome criterion in clinical trials, we found that this was associated with significant worsening, insignificant change, and significant improvement in the patients' perceived disability in 45%, 39% and 15% of patients, respectively. Conclusion: Patients' perception of change in disability differs not only quantitatively but also qualitatively from that of an examining physician. This seems to be due both to the fact that there are true differences in change as perceived by the patient and that measured by the physician and to the fact that changes in many dimensions of disability that are relevant to the patient have no measurable impact on the EDSS. Quote Link to comment Share on other sites More sharing options...
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