Disability begets disability. There is no escaping the EDSS. #MSBlog #MSResearch
“Despite having a downer on the EDSS it remains the flawed gold standard for measuring the impact of MS on groups and individuals with MS. The message from this study below is that disability begets disability. Therefore if you have any evidence of disability, even if its hidden you are more likely to become disabled in the future. There is one proviso; this statement may not apply if you are on effective DMTs as the evidence suggests if you are a responder to first-line treatments or on highly-effective treatments you do better; the disability curve flat-lines or the slope is changed.”
“Are there other things that can be done to slow down disability progression? Yes, there are lifestyle things that can be done. Improved diet, exercise and stopping smoking if you smoke. All the things that have been shown to reduce your cardiovascular risk will also work in MS. Why? MS reduces your brain reserve therefore any other insult will result in additional hits to your functioning. We need to stop MSers getting other diseases, including lifestyle diseases.”
“Why doesn’t DMTs work in SPMS and PPMS then? We don’t know if they don’t. Inflammatory activity in the brain and spinal cord today plays out with regard to progression 2-3 years from now. Therefore progression today was started or primed several years ago. All the trials to date in progressive MS have been too short. The other is the level of expectation; if I go onto these treatments today then my progression should stop. It should be more liker if I go onto these treatments today I my progression will continue and will hopefully slow down or stop in several years time. We are all guilty of setting unrealistic goals for SPMS and PPMS treatments. It is time to recalibrate expectations and be realistic. I will do a detailed post on mechanisms of progressive MS to explain the science about my position.”
“It is also becoming clearer to me that I need to get our web EDSS calculator up and running ASAP. If you can’t track your own disability progression how are you going to be able to monitor the impact of these various interventions on your disease course?”
Chruzander et al. A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: Changes in disability and the value of different factors in predicting disability and mortality.J Neurol Sci. 2013 Jul 26.
BACKGROUND: MSers experience progressively worsening disability over a period of decades, thus further knowledge about the long-term changes in different areas of disability is essential.
OBJECTIVES: The aims of this study were to evaluate changes in disability over ten years in MSers, and to explore the value of personal and disease-specific factors and depressive symptoms in predicting disability. A further aim was to explore the value of these factors as predictors of mortality.
METHODS: This study was based on a 10-year follow-up of a population-based study in Stockholm (n=166). Home visits were used to collect data on personal and disease-specific factors, walking ability, manual dexterity, cognitive function, mood, activities of daily living (ADL) and social/lifestyle activities.
RESULTS: The proportion of the study population who had disability in cognition, mood and social/lifestyle activities remained stable, while the proportion with disability in walking, manual dexterity and ADL increased. Disease severity predicted an increase in all studied variables of disability except in depressive symptoms. Older age and depressive symptoms were associated with mortality.
CONCLUSION: This study illustrates the importance of tailored interventions for MSers and highlights the need for health-care professionals to consider the psychological aspects of the disease. Furthermore, our results indicate that the Expanded Disability Status Scale was a useful tool for predicting future disability.