EDSS and disability progression

Background: The Expanded Disability Status Scale (EDSS) is widely used to rate multiple sclerosis (MS) disability, but lack of disease duration information limits utility in assessing severity. EDSS ranking at specific disease durations was used to devise the MS Severity Score, which is gaining popularity for predicting outcomes. As this requires validation in longitudinal cohorts, we aimed to assess the utility of EDSS ranking as a predictor of 5-year outcome in the MSBase Registry.

Methods: Rank stability of EDSS over time was examined in the MSBase Registry, a large multicentre MS cohort. Scores were ranked for 5-year intervals, and correlation of rank across intervals was assessed using Spearman’s rank correlation. EDSS progression outcomes at 10 years were disaggregated by 5-year EDSS scores.

“Ranking is simply listing people in order of severity; like a class list based on exam marks. You then use the position in the list as a score of severity, e.g. 1 for the person with the lowest score.”

Results: Correlation coefficients for EDSS rank over 5-year intervals increased with MS duration: years 1-6=0.55, years 4-9=0.74, years 7-12=0.80 and years 10-15=0.83. EDSS progression risk at 10 years after onset was highly dependent on EDSS at 5 years; one-point progression risk was greater for EDSS score of greater than 2. Two-point progression was uncommon for EDSS score of <2 and more common at EDSS score of 4.

Conclusions: EDSS rank stability increases with disease duration, probably due to reduced relapses and less random variation in later disease. After 4 years duration, EDSS rank was highly predictive of EDSS rank 5 years later. Risk of progression by 10 years was highly dependent on EDSS score at 5 years duration. We confirm the utility of EDSS ranking to predict 5-year outcome in individuals 4 years after disease onset.

“This is a useful way of using the EDSS and may be of benefit when predicting relative disease outcome in large groups of MS’ers being followed over time.”

5 thoughts on “EDSS and disability progression”

  1. It' be better if less time was devoted to measuring disability scores and more attention was given to stopping or reversing damage.MS has become more about doctors devoting time to measuring the disease worsening nature and less to actually helping PwMS

  2. I think that's a little harsh. I don't know your circumstances but I know there is loads of research going on into MS. I think this paper could make newer PwMS feel better- maybe if immunomodulatory drugs could slow down damage they might not end up so disabled in the long run, although it doesn't really help those further down the line.

  3. TIMOTHY COETZEE: “I’m quite optimistic that in the next five years we’ll start to see a whole next generation of therapies that both will be restorative, protective and that will stop disease progression.” Speaking on VOICE OF AMERICA, 3rd October, 2011.I will argue that the first anonymous commentator should be more optimistic and less of a downer on scientists working in the field of MS research.Dude, everyone working in this area of research is saying they're confident something momentous is going to happen in the way MS is treated. Even the guys running this blog are saying it. Sure, they can't reassure you everyday that they're gonna crack MS, but they shouldn't need to. They're working on it and in the meantime they will need to measure how the disease progresses both in good and bad ways. That's the only way to achieve qualative studies into this horrible disease.Keep hope alive, man.

  4. Anon 1, disability has to be measured to find out if treatments work. Researchers need good ways to measure it.

  5. Just to add to the above comment, although hard work and research into MS is going on, a big worry is whether the costs of the drugs will be too much for NICE to afford. In the US, drugs are even more expensive than here in the UK, but still NICE is not agreeing to approve them.The journal Neurology in July 2011 examined information about more than 800 people who had been recently diagnosed with MS. The report predicted lost productivity over a 10 year period and claimed the costs were not proportional to benefits received.The study showed the drugs have provided some help to MS patients, but they cost as much as $30,000 a year.The study found the cost of the drugs is eight times higher than health policy experts believe is reasonable, when comparing their effect on patients. The experts say for drugs to be cost-effective, they should produce one additional quality year of life for every $100,000 in cost. The MS drugs studied cost more than eight hundred thousand dollars for every quality year of life produced affected more the development of the disease instead of treating the symptoms.The study organisers say the comparison would be much better if the drug costs were lower. They say the cost of the drugs in Britain, Canada and Germany is 67% percent lower than in the United States, yet still the UK is terrible when it comes to providing good drugs to treat MS.

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