“We are in the process of developing the user interface for our web-based EDSS calculator. The aim of the calculator is to give you the MSers the ability to calculate your own EDSS. Why? This will allow you to track your own disease course and related it the published literature on outcomes and prognosis. In away this project is part of the rapid democratization of MS management and knowledge. The calculator will give you some independence from your neurologist; i.e. you won’t have to ask your neurologist to examine you in detail and walk you for up to 500m to give you an EDSS score.”
Why is the EDSS flawed?
It is not underpinned by sound scientific principles that are necessary when developing a robust and reliable outcome measure. The EDSS was developed by a neurologist, John Kurtzke, who fashioned the scale to map onto the neurological examination. As a result the EDSS has many problems. It has high variability between raters; i.e. two raters seldom get the same score when assessing the same MSer on the same day. The EDSS varies depending on the time of day the assessment is done, for example an EDSS is often lower in the morning when you are not tired compared to the afternoon when you are tired.
Why is the EDSS the gold standard?
Despite all its weaknesses the EDSS is not going to go away in a hurry. All the MS natural history data that has been collected in the past, and continues to be collected, is based on the EDSS. In addition, all the current DMTs have been licensed using the EDSS as the primary outcome measure. In other words the regulators, FDA (US Food and Drug Administration) and the EMA (European Medicines Agency), are comfortable with the EDSS and know it well; they are unlikely to accept a new primary outcome measure for clinical trials.
What is the problem with EDSS for MSers?
Another problem with the EDSS is that you need a neurologist to perform a neurological examination to score the EDSS. This examination has to be very detailed and takes 20-40 minutes to complete; 20-40 minutes of a neurologists time is expensive and therefore it inflates the cost of obtaining disability information and it makes clinical trials expensive to do.
How do we calculate the EDSS?
The EDSS scale ranges from 0 to 10 in 0.5 unit increments, with one exception there is no 0.5 level. Higher scores represent higher levels of impairment or disability.
Although an EDSS of 0 (zero) is ‘normal’ you can still have neurological impairments detected using more sensitive tests, for example cognitive impairments.
1. Pyramidal – weakness or difficulty moving limbs.
2. Cerebellar – ataxia (unsteadiness of gait), loss of coordination or tremor.
3. Brainstem – problems with speech, swallowing, eye movements (double vision or jerky eye movements).
4. Sensory – numbness or loss of sensations.
5. Bowel, bladder and sexual function.
6. Visual function – reduction or loss of vision or a blind spot (scotoma).
7. Cerebral (or mental) functions and fatigue.
Each functional system is scored on a scale of 0 (no disability) to 5 or 6 (more severe disability).”
The following is a summary of the EDSS scores
0.0 – No disability, no abnormal clinical signs.
1.0 – No disability, minimal signs in one FS.
1.5 – No disability, minimal signs in more than one FS.
2.0 – Minimal disability in one FS.
2.5 – Mild disability in one FS or minimal disability in two FS.
3.0 – Moderate disability in one FS, or mild disability in three or four FS. No impairment to walking.
3.5 – Moderate disability in one FS and more than minimal disability in several others. No impairment to walking.
4.0 – Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m.
4.5 – Significant disability but up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance. Able to walk without aid or rest for 300m.
5.0 – Disability severe enough to impair full daily activities and ability to work a full day without special provisions. Able to walk without aid or rest for 200m.
5.5 – Disability severe enough to preclude full daily activities. Able to walk without aid or rest for 100m.
6.0 – Requires a walking aid – cane, crutch, etc – to walk about 100m with or without resting.
6.5 – Requires two walking aids – pair of canes, crutches, etc – to walk about 20m without resting.
7.0 – Unable to walk beyond approximately 5m even with aid. Essentially restricted to wheelchair; though wheels self in standard wheelchair and transfers alone. Up and about in wheelchair some 12 hours a day.
7.5 – Unable to take more than a few steps. Restricted to wheelchair and may need aid in transferring. Can wheel self but cannot carry on in standard wheelchair for a full day and may require a motorised wheelchair.
8.0 – Essentially restricted to bed or chair or pushed in wheelchair. May be out of bed itself much of the day. Retains many self-care functions. Generally has effective use of arms.
8.5 – Essentially restricted to bed much of day. Has some effective use of arms retains some self-care functions.
9.0 – Confined to bed. Can still communicate and eat.
9.5 – Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow.
10.0 – Death due to MS.
I totally agree with your comments re the EDSS disempowering MSers etc. It almost seems grotesque to me that one group of people should categorise another group by their disability, rather than their capability! The whole idea smacks of eugenics – I wonder if anyone else feels the same? Including the people who devised the scale and those who 'dish out' to a person whee they are on the scale. It makes me most uncomfortable, I absolutely hate it… rant rant!!
Totally agree – I hate it and the concept that one group should categorise another grrr! Plus, despite being capable of living independently and working full time, I am at 6.5 on the scale which sounds like I am about to be written off!Thanks for posting
That's why it's called Multiple. So losing the use of your hands, blindness ,spasms, incontinence and being in constant pain aren't counted? As my boss once told me, because I got on with my life, people thought I was okay. Maybe we should all create more fuss and let the doctors know we don't fit into any EDSS scale.
I have just been assessed using the EDSS scale. That has not changed, it is still 6 but my MS is now 18 months down the line, My balance has definitely deteriorarated. As for my writing, these days I frequently cannot read what I have written and that was not the case 18 months ago. I now find it much harder to tie up my shoe laces and button up my shirt.Yes the EDSS is flawed, my MS affects a lot more than my walking and different bits of me are deteriorating at different rates but no one has come up with anything else. What a pickle
There is also the Multiple Sclerosis Impact Scale-29 (consisting of 29 questions) which you can do yourself.www.mstrust.org.uk/competencies/downloads/MSIS-29.pdf
OK, so where can we find this new team-G modified EDSS? The old version is no good and we know it.
I've just been diagnosed and am utterly confused. I scored 3.5, yet cannot walk without crutches and fatigue and pain limits distance (not far without stopping, altering position, catching breath – you all know the score). Will this affect my DLA?
I have the same concerns. I saw my 'new' neuro for the first time a few weeks ago (DMD clinic). I was only in there for 10 minutes, and we just chatted about various things. When I got my letter, I was given an EDSS of 3.5 also. I'm dreading my PIP changeover now, as I'm afraid to use this letter. I suppose it's my own fault for forgetting my stick and looking well… 🙁
What's the EDSS score for a four wheeled rollator with a seat on it, because I never know when my legs will give way, could be 5 yards or ten yards?