Aa
Expanded Disability Status Scale
How many people have had their MS assessed and graded under the EDSS?
I have not heard many people talk about this and I just wondered what everyone's thoughts were about it and if they agreed with their grade. Also I wondered how quickly their grade has been changed by their neurologist over time (i.e. how their MS had progressed) and what their level of disability was at each grade.
I was graded at 2.5 a few months after dx in March 2010. I do not know what functional systems the consultant thought I had disabiliity in (it was in the drug trial and not my usual neuro) but I experience daily tingling, pins and needles in several places in my body... so would guess this related to the sensory functional system?
I shall ask for more information on my next visit.
Bye for now folks,
Sarah :)
I have not heard many people talk about this and I just wondered what everyone's thoughts were about it and if they agreed with their grade. Also I wondered how quickly their grade has been changed by their neurologist over time (i.e. how their MS had progressed) and what their level of disability was at each grade.
I was graded at 2.5 a few months after dx in March 2010. I do not know what functional systems the consultant thought I had disabiliity in (it was in the drug trial and not my usual neuro) but I experience daily tingling, pins and needles in several places in my body... so would guess this related to the sensory functional system?
I shall ask for more information on my next visit.
Bye for now folks,
Sarah :)
Mine was 2.5 at my last visit. I know this only because it was in my neuro's report, we didn't discuss it; though previously I had asked generally what his view of EDSS and he pretty much responded as Quix, and as Lu's neuro. He also thinks it's unreliable, misleading and kind of pointless in terms or measuring the impact of MS on overall functioning. I think he puts it in because he needs to rate patients as part of the process for continuing DMD coverage under the provincial health plan.
My neuro has a psychologist in his practice who administers the MSFC. I've done it twice now. They do a lot of research, and that is how they like to measure changes in their patients. My 9-hole peg test was slightly slower the second time, and I dropped a couple of pegs in the process.
Hmmmh very interesting responses and pretty much confirmed my own views that the EDSS has limited use. My perception was that it was entirely subjective based on the neuro you saw that visit, and the patient's ability to convey all that is going on for them.
At the end of the day probably the most important thing is our ability to walk and that is something that is far easier to assess than everything else that accompanies MS.
Thanks for interesting comments everyone.
At the end of the day probably the most important thing is our ability to walk and that is something that is far easier to assess than everything else that accompanies MS.
Thanks for interesting comments everyone.
I don't have a disability score (never been tested for that) and I don't consider myself disabled. But I've read about the scale you mention and I too thought that it's pretty much all about walking.
Not that walking isn't an important consideration and I'm not disparaging that part of the test, but as Q says, there's a whole lot more to MS problems than ambulation.
What if one is just too tired to accomplish anything? That's sure not malingering. Vision issues, balance, pain level, arm and hand problems, (and of course, cognition) can make
normal life almost impossible for some of us.
I know I'm just restating the obvious here, so I'll quit that, but I wonder if any forum members have found this scale appropriate, and most of all, useful.
I can see that it might help in getting Social Security disability approval, and so on, but does it have any other benefit to patients?
ess
Not that walking isn't an important consideration and I'm not disparaging that part of the test, but as Q says, there's a whole lot more to MS problems than ambulation.
What if one is just too tired to accomplish anything? That's sure not malingering. Vision issues, balance, pain level, arm and hand problems, (and of course, cognition) can make
normal life almost impossible for some of us.
I know I'm just restating the obvious here, so I'll quit that, but I wonder if any forum members have found this scale appropriate, and most of all, useful.
I can see that it might help in getting Social Security disability approval, and so on, but does it have any other benefit to patients?
ess
I agree that the EDSS seems to have little correlation with our experience unless we are directly talking about walking - distance and if assistance is needed.
My neuro only seems to care about comparing me to myself on earlier exams. Given the vast array of ways that MS can affect someone, it does make the most sense to keep any comparision limited to oneself.
The fact that the EDSS almost ignores cognitive function it is possible for someone to have a very low EDSS, and yet have to give up working (as happened to me) because of cognitive problems. That's just silly. Yes, I could dress myself and walk around the block, but I could not think fast enough to care for a sick premie.
Quix
Q
My neuro only seems to care about comparing me to myself on earlier exams. Given the vast array of ways that MS can affect someone, it does make the most sense to keep any comparision limited to oneself.
The fact that the EDSS almost ignores cognitive function it is possible for someone to have a very low EDSS, and yet have to give up working (as happened to me) because of cognitive problems. That's just silly. Yes, I could dress myself and walk around the block, but I could not think fast enough to care for a sick premie.
Quix
Q
My neuro doesn't like to do numbers - even when I ask about lesion count and o-band numbers, he just gives me a look like it really doesn't matter. So I have no numbers to fixate about. About the only number I get out of them is my weight, which is the one number I don't want to know.
But I know somewhere in my chart is my EDSS because they had to put that on my Accelerated Cure paperwork. That is also a research project, so I get the feeling that the EDSS numbers are used there more often. Come to think of it, the Kickboxing also assigned me an EDSS. I'm thinking that was in the area of 2-3 initially and improved after the study was done.
Lu
But I know somewhere in my chart is my EDSS because they had to put that on my Accelerated Cure paperwork. That is also a research project, so I get the feeling that the EDSS numbers are used there more often. Come to think of it, the Kickboxing also assigned me an EDSS. I'm thinking that was in the area of 2-3 initially and improved after the study was done.
Lu
I recall seeing my EDSS score when I go for my clinic appointments for the research study I'm in and the last one was around 6.5 or there abouts. It also had a statment that this is due to the fact that I was using a cane for balance. Seems kind of high to me still even when using a cane. Hmm...so 2.5.
There is a lot on the web about it. Like you, I haven't heard anyone talk about it. It would still be interesting to see if anyone else has been graded by their neuro's.
Julie
There is a lot on the web about it. Like you, I haven't heard anyone talk about it. It would still be interesting to see if anyone else has been graded by their neuro's.
Julie
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Mine fluctuated between 3 and 3.5 mostly for no reason perceptible to me. Less than a year before I started the trial, I was told by another neuro that my exam was "essentially normal" whatever that means. Inexplicably, I got a 2.5 on my last one in June. Well, actually, I think there was some operator error on the neuro's part. Or misperception on my part.
My experience with it makes me think it's not terribly reliable. Or I'm just too dense to understand my results. On the other hand, it doesn't seem to be sensitive enough to pick up the overall worsening that I perceive. The 3-3.5 range seems to cover a whole lot of ground. And I don't know how they can compensate in their scoring for the drugs I'm taking now which I wasn't at the beginning of the trial.
Some of the inconsistency seems to come from the fact that the neuros can do slightly different subsets of tests and, at least in my case, they didn't always seem to do the same ones.
There's a copy of the score sheet at https://www.msbase.org/msbase/resourceas/Neurostatus.pdf if you're interested.
I also just came across this overview of the EDSS:
http://www.mscare.org/cmsc/images/pdf/2009CMSC_Course_4_14_Cadavid.pdf
They list the pros and cons (note that there are a lot more cons) of the EDSS from Neurostatus as:
Advantages:
*In use for longer than 40 years
*Most widely used scale in MS research
*Relatively easy to use
Disadvantages:
*Insufficient reliability
*Ordinal scale
*Bimodal distribution (peaks at 2-3 and 6)
*Heavy weight on ambulation
*Susceptible to non-MS noise
*Poor assessment of cognition
*Poor assessment of upper extremity
*Limited reproducibility
I kind of like this comment from George Ebers in his critique of MS trials and what they measure (from http://www.bmj.com/cgi/content/full/340/jun03_1/c2693. There are a number of other interesting responses to "Multiple sclerosis risk sharing scheme: a costly failure" at http://www.bmj.com/cgi/content/full/340/jun03_1/c1672 on the perceived effectiveness of the DMDs and on the British risk sharing scheme where they are trying to look at the cost-benefit ratio of the DMDs)
"[My group’s independent analysis of data from the placebo arms of 31 large clinical trials found that the pivotal outcomes to be used in the scheme, including short term disability scores and relapse rates, were not valid surrogates. With no improvement in the treated arms within these original trials, efficacy hinged on preventing the worsening seen in those receiving placebo. The trials had defined disability progression as increases of 0.5 to 1 points on a standardised disability scale (Kurtzke) confirmed at 3-6 months, a measure that is clearly subject to—and jaw droppingly within—inter-rater variability. We found that patients in the placebo group improved just as often as they worsened, by amounts equivalent to the clinical criteria for treatment failure. It was thus evident that what was being measured was random variation and measurement error in imperfectly blinded studies."
Julie: After grade 4, it appears that the only thing that really matters is how far you can walk. The assumption seems to be that after a certain point that correlates well enough with the big picture.
I also had the MSFC (MS Functional Composite) in the trial. Has anyone had this? It's supposed to be an improvement on the EDSS for trials. It has a walking test, a hand coordination test and a cognitive test.
sho