Zero stars

Barts-MS rose-tinted-odometer – zero stars

Some of our readers are not satisfied with the Swedish Gothenburg 50-year follow-up data on MS outcomes, I presented yesterday; they make the comment that the data is out of date. However, there are very few databases that have 50+ year follow-up data; one of them is the Swedish National MS Register.

The following is the latest Swedish registry data that has recently been published on long-term outcomes. Please note the Swedish register includes over 98% of pwMS living in Sweden so it is arguably the best population-based MS database that exists. 

As you can see from figure over 90% of people in the registry with relapse-onset MS develop SPMS and over 90% eventually need a walking aid 50 years after clinical disease onset. This population includes pwMS from the pre-DMT era and post-DMT era. So the rosy-looking Gothenburg data loses it rosy-tint and becomes very grey when diluted out with the remainder of the country’s data.

Manouchehrinia et al. Clinical Course of Multiple Sclerosis: A Nationwide Cohort Study. Mult Scler, 23 (11), 1488-1495 Oct 2017.

Background: The course of multiple sclerosis (MS) has been studied in several cohorts; however, results have varied significantly.

Objective: To describe the clinical course of MS in a nationwide cohort of patients.

Method: Data from the Swedish MS register (SMSreg) were used to estimate the median time to the sustained Expanded Disability Status Scale (EDSS) scores 3.0, 4.0 and 6.0, onset of secondary progressive multiple sclerosis (SPMS) and death using Kaplan-Meier method. A possible effect of first-line treatments on age at EDSS 6.0 and SPMS was estimated.

Results: In all, 12,703 patients were included. Median ages at EDSS scores 3.0, 4.0 and 6.0 were 55.4 (95% confidence interval (CI): 54.8-55.8), 60.7 (95% CI: 60.1-61.2) and 64.3 (95% CI: 63.6-64.7), respectively. Median age at SPMS was 57.4 (95% CI: 56.9-57.9). The median age at the time of death was 80.5 (95% CI: 79.9-81.1). Males and progressive-onset patients showed higher risks of disability worsening. On average, treated patients gained 1.6 years (95% CI: 0.2-3) to EDSS 6.0 as a result of treatment.

Conclusion: Ages at disability milestones in this population-based cohort were higher than previously described in clinic- and regional-based samples. Nevertheless, MS patients die at younger age and live at an average almost 20 years with moderate and 30 years with severe disability.

CoI: multiple

14 thoughts on “Zero stars”

    1. Yeah that is worrying. DMT means disease modifying treatment. 1 year is not even statistically meaningful. Granted this doesn’t take account of the big guns approved in this last day of the decade. Surely this is evidence all first line treatments should be scrapped! Or have we mis read the data?

  1. Why the need to be rosy? I’m sure most who have MS understand the long term outlook still isn’t what it should be. Without acknowledging and addressing this how will it change? Or, should we just accept another variant of already existing immunosuppressive drug and call that progress?

    I enjoy this blog because it pulls no punches and does not pander time the status quo.

  2. Can’t see what or if the study concludes about the effectiveness of second-line/’more effective’ treatments?!

    1. It can’t. PwMS who have had MS more than 50 years have almost certainly missed out on DMTs, which by have been around about 25 years.

      1. So those in the study who’d had some time on the second line DMTs don’t inform on their effectiveness because they started them a long time after disease onset?

  3. Totally confirms my experience . Diagnosed 1965 as teenager . Two very severe attack’s . No DMTs other than ACTH…..what appeared to be complete recovery from total paralysis from waist down… with no further attacks at all. Then SPMS after 45 years… ..until DMTs have been used for 50 years there is no proper evidence that they do more than limit attacks and hopefully prevent SPMS ..but I think the jury is out on that hope.

  4. Prof G has essentially issued the same, piddling, derivative crop of posts for the last 12 years now.
    It’s just so staid … so pointless.
    No advances in CNS restoration. No real, proper progress for those with advanced MS.
    It’s shameful, actually. He chose to put his HEAD above the parapet, therefore deserves a dressing down.
    New decade, same old blog … same old disease, same old squabbling over whether MS is one disease or twenty sundry maladies.
    Search you’re soul, Prof G. It’s been a bad decade for MS.

    1. As my Nan used to say ‘if you can’t say anything nice, don’t bother saying anything at all’
      You have a choice whether to access this site or not.

      There are some of us who find this Blog immensely useful and informative, painful and annoying sometimes, but still overridingly valuable, and who genuinely want to wish ProfG, MD and all of the Bart’s team a Very Happy New Year

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