Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists

Heesen, Christoph and Kleiter, Ingo and Nguyen, Franziska and Schaeffler, Nina and Kasper, Juergen and Koepke, Sascha and Gaissmaier, Wolfgang (2010) Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists. MULTIPLE SCLEROSIS, 16 (12). pp. 1507-1512. ISSN 1352-4585,

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Abstract

Background: Natalizumab is associated with the potentially life-threatening side-effect progressive multifocal leukoencephalopathy (PML). Little is known about patients' and physicians' risk estimates and attitudes towards natalizumab treatment. Methods: Consecutive natalizumab-treated patients (n = 69) and neurologists (n = 66) in two centres and cooperating private practices received an evidence-based three-page information leaflet about natalizumab-associated PML and an evaluation sheet. Results: After reading the information, patients were significantly more likely than physicians to intend continuation of natalizumab treatment and willing to accept higher risks of PML: 49% of physicians would stop treatment at a PML risk of 2 : 10,000 or lower, while only 17% of patients would do so (p < 0.001). This difference could not be explained by risk calculation abilities or lack of understanding. Both groups overestimated natalizumab treatment effects. Conclusion: Patients had a significantly worse perception of multiple sclerosis as a malignant disease. We conclude that patients were willing to accept a higher risk of PML than neurologists. Coherent with their perception of risks and benefits, patients were also more willing to continue treatment. Open information about treatment-related risks is appreciated and might support shared decision making.

Item Type: Article
Uncontrolled Keywords: DECISION AIDS; INFORMATION; DISABILITY; DIAGNOSIS; MS; multiple sclerosis; natalizumab; progressive multifocal leukoencephalopathy; risk perception; shared decision making
Subjects: 600 Technology > 610 Medical sciences Medicine
Divisions: Medicine > Lehrstuhl für Neurologie
Depositing User: Dr. Gernot Deinzer
Date Deposited: 06 Jul 2020 09:46
Last Modified: 06 Jul 2020 09:46
URI: https://pred.uni-regensburg.de/id/eprint/23814

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