Author Topic: (Abst.) Benefit-risk perception of Tysabri in neurologists and large cohort of MS patients  (Read 115 times)

0 Members and 0 Guests are viewing this topic.

Offline agate

  • Administrator
  • *****
  • Posts: 9542
  • MS diagnosed 1980
  • Location: Pacific Northwest
This study seems to be saying that MS patients were more willing to take the PML risk of Tysabri than their neurologists.

From PubMed, April 23, 2017:

J Neurol Sci. 2017 May 15;376:181-190.

Benefit-risk perception of natalizumab therapy in neurologists and a large cohort of multiple sclerosis patients

Heesen C1, Kleiter I2, Meuth SG3, Krämer J3, Kasper J4, Köpke S5, Gaissmaier W6.

Author information

Institut für Neuroimmunologie und Multiple Sklerose (INIMS), Universitätsklinikum Hamburg-Eppendorf, Martinistr. 52, 2046 Hamburg, Germany. Electronic address:
Department of Neurology, St. Josef-Hospital, Ruhr-University-Bochum, Gudrunstr. 56, 44791 Bochum, Germany.
Department of Neurology, Neurology Clinic and Institute of Translational Neurology, Westfälische Wilhelms University, Albert Schweizer Campus 1, 48149 Münster, Germany.
Department of Health and Caring Sciences, Faculty of Health Sciences, University of Tromsø, Hansine Hansens veg 18, 9019 Tromsø, Norway.
Institute of Social Medicine, University Hospital Schleswig-Holstein, Ratzeburger Allee 160, 23538 Lübeck, Germany.
Department of Psychology, University of Konstanz, Universitätsstraße 10, 78464 Konstanz, Germany.


Natalizumab (NAT) is associated with the risk of progressive multifocal leukoencephalopathy (PML). Risk stratification algorithms have been developed, however, without detectable reduction of PML incidence.


To evaluate to which extent patients and physicians understand and accept risks associated with NAT treatment.


Prospective observational cohort study in German MS centers (n=73) among NAT-treated MS patients (n=801) and their neurologists (n=99). Patients included in this study had mean disease duration of 10.2years and a mean NAT treatment duration of 24months.
More than 90% of patients and physicians voted for shared decision making or an informed choice decision making approach. Patients and physicians perceived a similar threat from MS as serious disease and both overestimated treatment benefits from NAT based on trial data. Men perceived MS more severe than women and perception of seriousness increased with age in both groups and in patients as well with increasing disability. Although patients evaluated their PML risk higher, their risk acceptance was significantly higher than of their neurologists. Risk stratification knowledge was good among neurologists and significantly lower among patients.


While patients and physicians seem to have realistic risk perception of PML and knowledge of risk stratification concepts, the threat of MS and the perception of treatment benefits may explain the ongoing high acceptance of PML risk.
MS Speaks--online for 17 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010. Glatopa (glatiramer acetate 40mg 3 times/week) since 12/16/20.


Related Topics

  Subject / Started by Replies Last post
0 Replies
Last post November 16, 2016, 08:37:33 am
by agate
0 Replies
Last post May 17, 2017, 09:58:16 am
by agate
0 Replies
Last post May 12, 2019, 11:44:22 am
by agate
0 Replies
Last post December 05, 2020, 03:54:45 pm
by agate
0 Replies
Last post June 25, 2022, 09:04:49 pm
by agate