Women With MS Use Social Media to Augment Knowledge and Support: Riley Bove, MD

WATCH TIME: 4 minutes

“For a long time, it was, really, up to individual investigators, perhaps supported by pharma, to look at real-world outcomes of the safety of these medications, and so we're now in a situation where some clinicians just go by the label—and the FDA and EMA labels are different sometimes, and often conflicting. For the same drug class, there may be different recommendations.”

At the 2022 Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, June 1-4, in National Harbor, Maryland, a presentation from Riley Bove, MD, and colleagues suggested that women with multiple sclerosis (MS) engage with one another on social media platforms in discussion and knowledge sharing practices in an attempt to improve their understanding of their treatment options during pregnancy and family planning.¹

Bove, an associate professor of neurology at UCSF Weill Institute for Neurosciences, explained to NeurologyLive^® in a conversation at CMSC that the group evaluated 2437 total mentions on Twitter, Tumblr, Reddit, forums, blogs, and YouTube for prespecified keywords and fetch English mentions of disease-modifying therapy (DMT) use in women with MS. Each mention was then categorized by its sentiment—positive, neutral, or negative—and then validated and manually tagged to identify women who had been, were currently, or were planning to become pregnant or breastfeed.

All told, they manually analyzed 585 unique mentions, of which 255 related to DMTs. The major themes identified among the population—which included women planning pregnancy (n = 77) or currently pregnant/breastfeeding (n = 127)—were doubts about treatment or treatment delay because of safety concerns. Notably, though, DMTs were deemed to be perceived as safe when they were recommended by healthcare providers. Of those women who had been pregnant (n = 34), most of the mentions related to eagerness for treatment in the postpartum period.

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REFERENCE
1. Bove R, Pasquarelli N, Gafarova M, Eighteen C, et al. Perceptions and discussions on the use of disease-modifying therapies during family planning in women with multiple sclerosis. Presented at: CMSC Annual Meeting; June 1-4, 2022; National Harbor, MD. DMT06.