Alemtuzumab in Multiple Sclerosis: Lessons from Social Media in Enhancing Patient Care

Background: Alemtuzumab is a monoclonal antibody that has been approved for the treatment of relapsing-remitting multiple sclerosis (MS). Alemtuzumab is associated with infusion reactions and potential autoimmune complications. Patient education and understanding are crucial to favorable outcomes. Our objective was to observe communication on a peer-to-peer Facebook group for content, accuracy of posts, and number of "likes" per post and to compare shared themes to current approved prescribing information and educational modules.

Methods: We identified a Facebook group specific to alemtuzumab in MS. A 14-day window was observed. Posts were classified as "sharing" or "seeking information." Content analysis was used for information-seeking posts. Accuracy of replies was compared with product prescribing information.

Results: We reviewed 458 posts. Members contemplating receiving or currently receiving alemtuzumab primarily used Facebook for information gathering (54.6%), followed by seeking emotional support and sharing personal experiences (45.4%). Most shared experiences (83.6%) were positive. Themes for information were predominantly consistent with standard protocols. Complications discussed included infection (15.50%), bone pain (11.80%), immune thrombocytopenia (8.07%), and fatigue (7.46%). Accuracy of replies was consistent with product information except for immune thrombocytopenia.

Conclusions: Some patients with MS look to online groups for discussion, peer support, and information. Although written guidelines on the studied home page reinforce that online discussion "does not replace medical advice," inaccurate information does occur. Health-care providers' reviews of these online sites allow insight into the real-world experiences of patients receiving alemtuzumab, with potential for modification of educational approaches by health-care professionals.