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,
Full text not available from this repository. (Request a copy)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 |
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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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