Contributions
Abstract: P693
Type: Poster
Abstract Category: Therapy - disease modifying - Long-term treatment monitoring
Introduction: Alemtuzumab (Lemtrada®) is an anti CD52, monoclonal antibody that has recently been approved for the treatment of Relapsing Remitting Multiple Sclerosis (RRMS). Lemtrada® is associated with infusion reactions and potential autoimmune side effects and requires long-term safety follow up. Patient education and early detection of side effects is crucial to favourable outcomes.
Objectives: Surveillance via automated blood-tracking algorithms, clinical review and patient education aim to help patients understand the risks associated with Lemtrada®. The primary objective of this study was to observe the communication on Facebook for type of post, accuracy of shared information and comparison to standard educational themes.
Methods: We identified a Facebook group specific to Lemtrada® in RRMS. A 14-day consecutive window was observed. Posts were classified as “sharing” or “seeking information”. Information seeking posts were coded for themes and accuracy of replies.
Results: 458 posts were reviewed. Our observation suggest patients contemplating or receiving Lemtrada® primarily used the social media platform Facebook for information gathering (54.6%), followed by seeking emotional support and sharing personal experiences (45.4%). The latter resulted in more “likes” (1 post to 34 “likes” in contrast to information seeking 1 post to 6.5 “likes”). The majority (83.6%) of shared experiences were positive.
Themes for information were predominately consistent with standard protocols. Complications discussed included infection (15%), bone pain (12%), Immune thrombocytopenia (ITP) (8.1%) and fatigue (7.5%). Accuracy of replies were consistent with local protocol and product information with the exception of ITP. Up to a quarter of replies to this complication were inaccurate.
Conclusion: Our findings illustrate that MS patients are increasingly looking for online groups for discussion and pear support but primarily information. Whilst administrators of these groups reinforce the discussions “do not replace medical advice” inaccurate information does occur and can lead to possible delays in seeking treatment. Health care providers transparent review and acknowledgement of these sites allows insight into the real world experiences and concerns of patients receiving Lemtrada®.
Disclosure:
Louise Rath-Travel grants from Biogen & Novartis and Speakers Honorarium from Biogen, Novartis & Genzyme
Nirosen Vijiaratnam- Unconditional educational grants from Ipsen & Biogen and travel grants from Ipsen & Abbvie
Olga Skibina-Research grant from Biogen, Travel grants from Biogen, Novartis & Bayer and Speakers Honorarium from Bayer, Biogen, Genzyme & Novartis
Abstract: P693
Type: Poster
Abstract Category: Therapy - disease modifying - Long-term treatment monitoring
Introduction: Alemtuzumab (Lemtrada®) is an anti CD52, monoclonal antibody that has recently been approved for the treatment of Relapsing Remitting Multiple Sclerosis (RRMS). Lemtrada® is associated with infusion reactions and potential autoimmune side effects and requires long-term safety follow up. Patient education and early detection of side effects is crucial to favourable outcomes.
Objectives: Surveillance via automated blood-tracking algorithms, clinical review and patient education aim to help patients understand the risks associated with Lemtrada®. The primary objective of this study was to observe the communication on Facebook for type of post, accuracy of shared information and comparison to standard educational themes.
Methods: We identified a Facebook group specific to Lemtrada® in RRMS. A 14-day consecutive window was observed. Posts were classified as “sharing” or “seeking information”. Information seeking posts were coded for themes and accuracy of replies.
Results: 458 posts were reviewed. Our observation suggest patients contemplating or receiving Lemtrada® primarily used the social media platform Facebook for information gathering (54.6%), followed by seeking emotional support and sharing personal experiences (45.4%). The latter resulted in more “likes” (1 post to 34 “likes” in contrast to information seeking 1 post to 6.5 “likes”). The majority (83.6%) of shared experiences were positive.
Themes for information were predominately consistent with standard protocols. Complications discussed included infection (15%), bone pain (12%), Immune thrombocytopenia (ITP) (8.1%) and fatigue (7.5%). Accuracy of replies were consistent with local protocol and product information with the exception of ITP. Up to a quarter of replies to this complication were inaccurate.
Conclusion: Our findings illustrate that MS patients are increasingly looking for online groups for discussion and pear support but primarily information. Whilst administrators of these groups reinforce the discussions “do not replace medical advice” inaccurate information does occur and can lead to possible delays in seeking treatment. Health care providers transparent review and acknowledgement of these sites allows insight into the real world experiences and concerns of patients receiving Lemtrada®.
Disclosure:
Louise Rath-Travel grants from Biogen & Novartis and Speakers Honorarium from Biogen, Novartis & Genzyme
Nirosen Vijiaratnam- Unconditional educational grants from Ipsen & Biogen and travel grants from Ipsen & Abbvie
Olga Skibina-Research grant from Biogen, Travel grants from Biogen, Novartis & Bayer and Speakers Honorarium from Bayer, Biogen, Genzyme & Novartis