Multiple sclerosis in Germany: Updated analysis of the German MS Registry 2014-2018

Abstract

Background In 2001, the German MS (Multiple Sclerosis) society (DMSG) initiated a nation-wide registry aimed at collecting epidemiological data on people with MS (PwMS) focusing on disease forms, provision of care and access to treatment. Objective To provide an update on baseline data, health care situation and employment status of PwMS in Germany. Methods As of February 2018, data from 168 MS units from different health care providers (university hospitals, neurological clinics, rehabilitation centres and neurological practices) were included. In 2014, the documentation platform was changed to a web-based electronic data capture (EDC) system enabling comprehensive data collection and integration of interfaces for different documentation systems. Quality management measures ensure that the data are valid and representative. To give an up-to-date picture of the situation in Germany, the current analysis focused on patient data with an update within the last 4 years by using thelatest data on each patient. Results Data on 18,030 PwMS fulfilled the inclusion criteria for analysis. Mean age (± SD) was 46.3 ± 12.2 years, 72 % were women, mean disease duration of MS was 10.6 ± 8.7 years, and median EDSS was 3.0. The disease course was relapsing-remitting in 74.2 %, secondary progressive in 16.1 %, and primary progressive in 5.5 %. The majority of PwMS (75.2 %) was treated with disease-modifying drugs (DMD), mostly with interferons, followed by fingolimod, glatirameracetate, dimethylfumarate, natalizumab, and teriflunomide. Symptomatic treatment was administered to 28.3 % (cognitive deficits) and 86.0 % (spasticity) of PwMS suffering from these symptoms. Only 37.5 % of PwMS were fully employed, and 22.5 % had retired prematurely. Work ability decreased with increasing age and disability. Conclusion The current analysis suggests a more favourable outcome than our previous analysis more than 10 years ago, which is in line with studies from other countries. Whereas most PwMS received DMDs, symptoms of MS seem to be undertreated. The low rate of fully employed PwMS underlines the need for more effective strategies that help maintain their functional level and social participation.