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

• Published in: Multiple sclerosis 2010-12, Vol.16 (12), p.1507-1512
• Main Authors: Heesen, Christoph, Kleiter, Ingo, Nguyen, Franziska, Schäffler, Nina, Kasper, Jürgen, Köpke, Sascha, Gaissmaier, Wolfgang
• Format: Article
• Language: English
• Subjects: Adult; Antibodies, Monoclonal - adverse effects; Antibodies, Monoclonal, Humanized; Biological and medical sciences; Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases; Female; Health Knowledge, Attitudes, Practice; Humans; Immunologic Factors - adverse effects; Leukoencephalopathy, Progressive Multifocal - chemically induced; Male; Medical sciences; Middle Aged; Multiple Sclerosis - drug therapy; Multiple sclerosis and variants. Guillain barré syndrome and other inflammatory polyneuropathies. Leukoencephalitis; Natalizumab; Neurology; Patients; Perception; Physician-Patient Relations; Physicians; Risk
• ISSN: 1352-4585; 1477-0970
• DOI: 10.1177/1352458510379819

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.