“In response to the following question on my post on ‘what does your neurologist look for when (s)he looks in your eyes?‘ we have decided to let our web-EDSS go live for you to use.
‘There is plenty of criticism on this blog and other sites about how poorly the EDSS reflects the impact that a person’s MS has on their functioning. Will the web-EDSS you are developing simply replicate the current EDSS with all of its short-comings or will it be some sort of positive step in a different direction?’
“The takehome message is that the EDSS done as part of routine clinical practice is simply not reliable in most MS Centres. Having a proxy, i.e. the web-EDSS, bypasses the need to ask your neurologist to do the EDSS. Maybe you disagree?”
“Once you have your EDSS what do you do with it? You can use it to monitor your disease or you may want to use it to assess your prognosis. The last abstract below describes the so called MS Severity Scale (MSSS). This uses your disease duration (time since onset of your disease) and the EDSS to see where you rank yourself on a scale from zero to ten (0-10) compared to other MSers. The higher your score the worse off you are. I have taken these scores from the MSSS data file (version 3) and put them into a table for you to look-up your MSSS.”
“In addition to assessing and/or monitoring your MS and working out how severe your MS is the web-EDSS could provide a cheap and easy way to do new studies including a proxy for the EDSS. The web-EDSS may allow us to gradually get rid of the EDSS from future studies; why do both the physician and web-EDSS; the physician EDSS is expensive? Surely the web-EDSS will be sufficient?”
“Where to from here? We are already working on improving version 1 of the web-EDSS. We are planning to expand the range of 6.0 – 8.0 by making it more granular. At present the scale goes up in 0.5 increments; we feel the way we have asked questions in such a way as to make this part of the scale more detailed; we are proposing 0.25 or 0.2 point increments. We are also working on including better walking distance estimates as part of the calculator to make it much more accurate as a walking scale. We are very aware that people are very poor at estimating their real walking distance. Another weakness of the web-EDSS is knowing about your neurological examination. At present we recommend that you ask your neurologist if your neuro exam is abnormal; for example do you have pallor of the optic disc, do you have abnormal reflexes, etc. In the future we plan to build in tools that will allow a self-assessment of some of these hard to get at neurological assessments. In other words we would like the web-EDSS to be completely independent of neurologists. Now wouldn’t that be nice?”
Leddy et al. Validating a novel web-based method to capture disease progression outcomes in multiple sclerosis. J Neurol. 2013 Oct;260(10):2505-10.
Background: The Expanded Disability Status Scale (EDSS) is the current ‘gold standard’ for monitoring disease severity in multiple sclerosis (MS). The EDSS is a physician-based assessment.
Roxburgh et al. Multiple Sclerosis Severity Score: using disability and disease duration to rate disease severity. Neurology. 2005 Apr 12;64(7):1144-51.
METHODS: Using data from two large longitudinal databases, the authors tested whether cross-sectional disability assessments are representative of disease severity as a whole. An algorithm, the Multiple Sclerosis Severity Score (MSSS), which relates scores on the Expanded Disability Status Scale (EDSS) to the distribution of disability in patients with comparable disease durations, was devised and then applied to a collection of 9,892 patients from 11 countries to create the Global MSSS. In order to compare different methods of detecting such effects the authors simulated the effects of a genetic factor on disability.
RESULTS: Cross-sectional EDSS measurements made after the first year were representative of overall disease severity. The MSSS was more powerful than the other methods the authors tested for detecting different rates of disease progression.
CONCLUSION: The Multiple Sclerosis Severity Score (MSSS) is a powerful method for comparing disease progression using single assessment data. The Global MSSS can be used as a reference table for future disability comparisons. While useful for comparing groups of patients, disease fluctuation precludes its use as a predictor of future disability in an individual.
Thank you. This is a very useful tool and well designed. Some suggestions: why don't you simply include the MSSS as part of the web-EDSS's output? Do you have plans to make this multilingual? I don't think people with MS who don't speak english should be disenfranchised. How about including some other outcome measures in the calculator so that we can use it for monitoring other aspects of our disease?
yes multi lingual is the plan, they laughed at me yesterday when i asked can't we just use google translate.
Wonder if we can get the group to do the translations…:-)DrK can do the German, DrMnM the portugese or maybe Rachel will do this…I'll do the Yorkshire…Yes they did give new doctors a translation card when they statred working in South Yorkshire.How are you feeling Mr Blogs?Happen I'm a bit mithered
I recall seeing a doc on an NHS site that had a list of local slang for non local medical staff. I can't find it anymore though.
Found the link, MD is it OK to publish this?http://regmedia.co.uk/2006/04/24/glossary_for_international_recruits.pdfI believe this is a genuine document and not a joke.
Very good
So many words for knob…they forgot that one
This is an excellent initiative, it would be good to update outdated EDSS score and make it fit for our times and modern devices. My neurologist always sends me a copy of her notes from any clinical contact (very nice of her) and I always sit with a feeling that she just "does not get it" as everything is just fine (I can walk in a straight line, talk, touch my nose, read etc).Well, who knows, maybe a computer program is more objective, I got a 3 on your web based score and that, I feel, is a better reflection of how things are going at the moment. So thank you for trying to innovate in this field.
I'm guessing that if you are slumped in an electric wheelchair or bed-bound, you don't need a score to know that your MS is very severe and there's nothing you can do about it. It might be of interest to know that you are 3.25 or 3.5, or have increased 0.25 in a year, but until drugs are available to stop neuro-degeneration, or to help repair some of the damage, it's all a bit academic.
Not quite so academic if EDSS is about 6. Many trials have a maximum EDSS of 6 or 6.5.EDSS is a meaure of mobility and is most valuable when your svcore is between 4 and 8
I thought this was a fantastic idea. My EDSS through a physician is 6.5 and I scored 6. People do tend to see themselves slightly better than they actually are. Here are a few suggestions that apply to me.A measure of a persons independence, dependence upon other people to do day to day and motivation might be sensible. What kind of walking aid do you use? I use a rollator and not a zimmerframe. I use it all the time and I can walk about 700 – 900 metres with it. With 2 stick I would guess about 200 metres. You do not mention intermettents self catheterisation. I have to do ISC but have good bfairly good bladder controlNot too sure what you meant by bilateral and unilaateral.Any point in bringing FES into the equation
I also have to ISC. Other EDSS calculators put me at 4 while this puts me at 5. However I would assume the value would not change is you have a permanent catheter or have to use intermittent self catheterization.
I've done the assessment but feel I am none the wiser for it. I don't feel it can foretell my future either. Sorry to be a grouch. Perhaps it is useful to some.
Great, very useful.My EDSScore is 2.5.My Deciles is 5th and my Prognosis is >>>>>.What does that mean?Can you please explain 5th and >>>>>?
I came out at 7.5. I'm really closer to 8. Maybe 7.75!!!I struggled to get through the sort of lower stages – there was an assumption I could at least walk a couple of steps with an aid of some kind. An answer on the first one that allowed me to say "I can't walk and I use a wheelchair all of the time" would have skipped me right up to the questions that were more valuable to me.The EDSS is a very blunt tool, as we all know, but I would like to be able to record my changes. For example transferring – being able to record, for example, the change between transfer alone, need help sometimes, need help most times, always need help, would give that gradations.In response to the person who commented about those of us who are "slumped in an electric wheelchair" don't need a score, and so on, the answer for me is yes I do, because I want to track the rate of decline, just to see if there's any pattern at all. I think you'll find those of us at the top end of the scale are just as interested as those at the bottom end of the scale. And, of course, the EDSS is non linear.
I think that you take your EDSS and the number of years since onset to give you your MDSS. This MDSS is your prognosis. It is probably important that the MDSS figure has the fact that one stays on medication baked into that figure. So if your prognosis is good I would think that you stil need to maintain your assigned therapy.
Thanks guys great work! So easy to complete (I like the option to go back and change answers that's helpful) and a useful record to go back to and reassess every so often. My result just a tad lower than my clinic record but that's because us patients tend to look on the bright side with glasses half full 😉
My screens did not include an option to go back and review or change my answers. I'm using Internet Explorer 11. Maybe I should go back and do it all again using Mozilla and see what displays on screen…… Internet Explorer does cause problems with some stuff.
Thank you, this is interesting, though having said that I have no idea what to make of it.One thing it does not allow for is variability so do you score yourself at best or at worst? There are times (not often now) when I can walk for a couple of hours without a rest (though one of my legs will be dragging) and other times I really struggle with a 100 metres as my legs feel so heavy.Interesting that numbness scores but altered sensation/parasthesia does not. Is that because you can test for numbness but parasthesia is too subjective?What is the value of EDSS? My neurologist tells me that they can't predict how my MS will behave. Does this chart have a definite predictive value or does it just put you on a scale which you can then use for comparison between people or to monitor a patient? Does it tell you anything new?
I agree Sue a, the EDSS has no value, without the rest of MS symptoms. My physio took me out and was surprised that I couldn't manage 10 yards. On paper it's fine, the reality is quite different.
Is that who we are, just numbers on a chart? MSers of the world unite! We are more than just our number(s)……….or maybe not:-)
Having your own set of numbers gives you a better capacity to get in the driver's seat, instead of just being a passive recipient of whatever your treating clinicians choose to tell you.
This Anon is delighted that the question she posed (quoted above by Prof G) has prompted early release of the first version of your on-line EDSS for "testing" by real people in MS-land and not just Barts patients. I have gone through and done the assessment and came up with 5.0 as my score, when my official neuro done score was 3.5 about a year ago. However, I think I am actually more of a 4 or 4.5, and suspect that this is a carry-over of the much grumbled about short-comings of the EDSS as a measurement tool with the often criticised focus on walking capacity. My biggest problem with the EDSS is that it does not measure impact, i.e. the degree of variation from normal functioning that an individual suffers from as a result of their MS – for example cog fog is not adequately covered. My worst impact from my MS is on my mobility, even though I don't yet need any walking aids, and I know that this skews my score upwards.A problem I found with completing the assessment was the amalgamation of some symptoms/impacts into the same question. How do you answer when one of the symptoms affects you a lot, and others have either a negligible or nil impact?The tool could use a "Back" button – there were some questions where I wanted to re-consider my response by had no way of doing so unless I used the Back arrow in my browser – which I didn't do this time because many of these online tools throw hissy fits if you do that. A little bit of a spiel on the log-in page would also be handy, i.e. why you need to register, who will have access to the data, etc.My numbers on the MSSS thing came up at between 6.8 to 7.6 based on EDSS scores of 4, 4.5 and 5.0, but this didn't make any sense to me. What does this actually mean?I actually see no reason why some solid careful design work cannot produce an assessment tool which is more realistically reflective but which can also be "translated" so as not to create a great divide between the EDSS having been used as an outcome measure in so many past clinical trials, and new trials in the future. If a suitable tool is designed it should enable better measurement and analysis of trial outcomes, while still being able to compare data with previous trials.I have many more thoughts about how such a tool could and should work, but have drivelled on here quite enough, so will now go and attend to some mundane domestic chores!!!
You will be able to use the ‘back’ button on your browser to click back to previous pages without the tool having a hissy fit : )We’re writing a statement for the introduction about the data storage / usage now. Will update soon!We are also working on different languages.Apart from the obviously flaws in the scale, we’re delighted that so many of you are using it and have found it helpful, if not thought provoking. As Gavin mentioned, I am working on a "solid careful design" of an alternative assessment tool and so would be very interested to hear your thoughts on this – please contact me so we can talk about this more: bartsmsblog (at) gmail (dot) com Also more comments on usability are very welcome!
In response to many comments above. Yes, the web-EDSS will get better and it will evolve. When we validated the algorithm we ran it as a SurveyMonkey questionnaire, that did not give you your score. So having your score in real time is an innovation. We agree the web-EDSS does not measure impact, which is why Alison in our groups is working on developing an outcome measure that is more human and relates to how you live and not the way neurologists see the world.And no you are not just a number; but sometimes being able to measure something allows us to do something about it. In general you can't change things unless you can measure them.
Why are > 30 years since diagnosis lumped together? For me that's been the most significant years of the disease and I know I'm not the only one.
Until someone thought in order mount an EDSS calculator. It is very important, every time whether to routine queries and if you are served by another expert EDSS just never be the same, even if the disease apparently has not evolved … Thank Docs !!
Prof G,But in reality "but sometimes being able to measure something allows us to do something about it" isn't correct. I was told I had slightly high blood pressure (can't remember the exact reading) and I lost some weight and upped my cardio work and my readings are now normal. My EDSS (3) is what it is – it's been the same after an induction therapy (campath) eight years ago. There is nothing available to help me reduce this number. Knowing the number doesn't give me any more / less control. Maybe I'm the odd one out as I can't see how assigning a number to your level of disability helps in any way.
Is it necessary to clump the problems together? For example, now you can't have urinary incontinence without constipation. The same goes for concentration, memory or mood. Now one can't have memory problems without mood problems. Can't the problems be separated and let the computer clump them together if necessary.
Well said!!
I agree. Too general, and therefore unable to be accurate in recording information. Let's face it, most people that like using these tools are those that like to record accurate information.
How does measuring your EDSS help in day-to-day clinical practice?
Before hsct i put myself at a 5.5. in mexico i was at a 6 because i had to cath to urinate. one question was related to working. i don't work, so the question regardin working w/ provisions really did't apply to me
The first several questions with regards to walking assume that a person is able to walk at least a few steps with bilateral assistance. All the options include some degree of mobility. My husband cannot walk at all, period. There was nowhere to capture that information in your questionnaire. So, I hope you will make that update for next time. Great tool overall and a great service to the MS community. Thank you!
Could we possibly get a field to record our 9 hole peg test times with the EDSS tracker?I like to do them both together every three months and I love the way i can track my EDSS score on the site, I'd love to have the same for the peg test.
The EDSS tells me at 4.5 I can work a full day. This is just not true. I don't think it takes good account of fatigue issues, or the fact that I am not allowed to drive anymore (despite having hand controls) – I guess the more detailed it gets, the longer it gets the lower the levels of participation, so I appreciate the dilemma. But for some people, maybe concentrating on their ADL's a bit more would give a good indication of their EDSS. However, overall its a great tool. I like being able to record these things.
Sorry, I am too ill to complete these tests. I don't have the peg thing to play with so I guessed. I have no idea how long it would take me to walk tat far, I wouldn't dare try it without the wheelchair. So my questionaire would be no use to you.