Time to diagnosis in multiple sclerosis: Epidemiological data from the German Multiple Sclerosis Registry
Abstract
Objective:
To investigate the time to diagnosis in multiple sclerosis (MS) in Germany.
Methods:
Analysis of real-world registry data from the German Multiple Sclerosis Registry (GMSR) and performing a primary analysis in patients where month-specific registration of the dates of onset and diagnosis was available.
Results:
As of January 2020, data of a total of 28,658 patients with MS were extracted from the GMSR, with 9836 patients included in the primary analysis. The mean time to diagnosis was shorter following the introduction of the first magnetic resonance imaging (MRI)-based McDonald criteria in 2001. This effect was most pronounced in younger adults below the age of 40 years with relapsing onset multiple sclerosis (ROMS), with a decrease from 1.9 years in 2010 to 0.9 years in 2020, while unchanged in patients aged 40–50 years (1.4 years in 2010 and 1.3 years in 2020). In the limited number of paediatric onset MS patients, the time to diagnosis was longer and did not change (2.9 years).
Conclusion:
The current sensitive MRI-based diagnostic criteria have likely contributed to an earlier diagnosis of MS in Germany in younger adults aged 18–39 years with ROMS. Whether this translated to earlier initiation of disease-modifying treatment or had a beneficial effect on patient outcomes remains to be demonstrated.
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References
1. Thompson AJ, Baranzini SE, Geurts J, et al. Multiple sclerosis. Lancet 2018; 391: 1622–1636.
2. Von Bismarck O, Dankowski T, Ambrosius B, et al. Treatment choices and neuropsychological symptoms of a large cohort of early MS. Neurol Neuroimmunol Neuroinflamm 2018; 5(3): e446.
3. Bergamaschi R, Quaglini S, Tavazzi E, et al. Immunomodulatory therapies delay disease progression in multiple sclerosis. Mult Scler J 2012; 22: 1732–1740.
4. Tremlett H, Marrie RA. The multiple sclerosis prodrome: Emerging evidence, challenges, and opportunities. Multi Scler J 2020; 27: 6–12.
5. Thompson AJ, Banwell BL, Barkhof F, et al. Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. Lancet Neurol 2018; 17: 162–173.
6. Habek M, Pavičić T, Ruška B, et al. Establishing the diagnosis of multiple sclerosis in Croatian patients with clinically isolated syndrome: 2010 versus 2017 McDonald criteria. Mult Scler Relat Disord 2018; 25: 99–103.
7. Hyun JW, Kim W, Huh SY, et al. Application of the 2017 McDonald diagnostic criteria for multiple sclerosis in Korean patients with clinically isolated syndrome. Mult Scler 2019; 25(11): 1488–1495.
8. Lee DH, Peschke M, Utz KS, et al. Diagnostic value of the 2017 McDonald criteria in patients with a first demyelinating event suggestive of relapsing-remitting multiple sclerosis. Eur J Neurol 2019; 26(3): 540–545.
9. Schwenkenbecher P, Wurster U, Sühs KW, et al. Applying the 2017 McDonald diagnostic criteria for multiple sclerosis. Lancet Neurol 2018; 17: 496–497.
10. Van der Vuurst de Vries RM, Mescheriakova JY, Wong YYM, et al. Application of the 2017 revised McDonald criteria for multiple sclerosis to patients with a typical clinically isolated syndrome. JAMA Neurol 2018; 75: 1392–1398.
11. McNicholas N, Lockhart A, Yap SM, et al. New versus old: Implications of evolving diagnostic criteria for relapsing-remitting multiple sclerosis. Mult Scler 2019; 25(6): 867–870.
12. Schwenkenbecher P, Wurster U, Konen FF, et al. Impact of the McDonald criteria 2017 on early diagnosis of relapsing-remitting multiple sclerosis. Front Neurol 2019; 10: 188.
13. Ziemssen T, Hillert J, Butzkueven H. The importance of collecting structured clinical information on multiple sclerosis. BMC Med 2016; 14: 81.
14. Glaser A, Stahmann A, Meissner T, et al. Multiple sclerosis registries in Europe: An updated mapping survey. Mult Scler Relat Dis 2019; 27: 171–178.
15. Ohle LM, Ellenberger D, Flachenecker P, et al. Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry. Sci Rep 2021; 11: 13340.
16. Wallin MT, Culpepper WJ, Campbell JD, et al. The prevalence of MS in the United States. Neurology 2019; 92: e1029.
17. Zeyden B, Kantarci O. Impact of age on multiple sclerosis disease activity and progression. Curr Neurol Neurosci Rep 2020; 26: 24.
18. De Seze J, Delalande S, Michelin E, et al. Brain MRI in late-onset multiple sclerosis. Eur J Neurol 2005; 12(4): 241–244.
19. Geraldes R, Ciccarelli O, Barkhof F, et al. The current role of MRI in differentiating multiple sclerosis from its imaging mimics. Nat Rev Neurol 2018; 14: 199–213.
20. Cortese R, Collorone S, Ciccarelli O, et al. Advances in brain imaging in multiple sclerosis. Ther Adv Neurol Disord 2019; 12: 859722.
21. Höer A, Schiffhorst G, Zimmermann A, et al. Multiple sclerosis in Germany: Data analysis of administrative prevalence and healthcare delivery in the statutory health system. BMC Healt Serv Res 2014; 14: 381.
22. Kelly SB, Kinsella K, Duggan M, et al. A proposed modification to the McDonald 2010 criteria for the diagnosis of primary progressive multiple sclerosis. Mult Scler J 2012; 19: 1095–1100.
23. Montalban X, Hauser SL, Kappos L, et al. Ocrelizumab versus placebo in primary progressive multiple sclerosis. N Engl J Med 2016; 376: 209–220.
24. Swedish MS registry (SMSREG). Web-based platform for live visualization and interactive statistical analysis: Average time between onset and diagnosis divided by year of diagnosis, https://vap.carmona.se/open/msvap/graf/medeltid_deb_dia/ (accessed 19 November 2020).
25. Kingwell E, Leung AL, Roger E, et al. Factors associated with delay to medical recognition in two Canadian multiple sclerosis cohorts. J Neurol Sci 2010; 292: 57–62.
26. Barin L, Kamm CP, Salmen A, et al. How do patients enter the healthcare system after the first onset of multiple sclerosis symptoms? The influence of setting and physician specialty on speed of diagnosis. Mult Scler J 2019; 26: 489–500.
27. McKay KA, Hillert J, Manouchehrinia A. Long-term disability progression of pediatric-onset multiple sclerosis. Neurology 2019; 92: e2764–e2773.
28. Erdal JL, Kopp TI, Blinkenberg M, et al. Clinical characteristics and use of disease modifying therapy in the nationwide Danish cohort of paediatric onset multiple sclerosis. Mult Scler Relat Disord 2020; 37: 101431.
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Article first published online: August 27, 2021
Issue published: May 2022
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PubMed: 34449299
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