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Swedish Gothenburg 50-year follow-up data on MS outcomes, I presented yesterday; they make the comment that the data is out of date.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.