Women of reproductive age were more likely to be diagnosed with multiple sclerosis (MS). Although various disease-modifying treatments (DMTs) were available, most of them were not licensed for use in pregnant, trying to become pregnant, or breastfeeding women. In addition, practice guidelines vary by location, and advice from different health care practitioners (HCPs) might differ. For a study, researchers sought to use social media listening to acquire insight into attitudes and discussions around using DMTs during pregnancy or lactation in women with MS. As a preliminary analysis, the social media listening tool Brandwatch was used to search selected websites for predefined keywords and gather English mentions of DMT usage in women with MS from August 18, 2020, to August 18, 2021. The open-access outlets are Twitter, Tumblr, Reddit, forums, blogs, and YouTube. Mentions were checked for accuracy and manually tagged to identify women who had been, were, or planned to become pregnant or breastfeed. Each remark was categorized as good, neutral, or negative in terms of sentiment.
About 585 unique mentions were carefully evaluated out of 2,437 total mentions, with 255 relating to DMTs. Doubts about delays in treatment due to safety concerns were common themes among women planning pregnancy (n=77) or currently pregnant/breastfeeding (n=127), despite DMTs being viewed as safe when advised by HCPs. Women who had been pregnant (n=34) were urged to obtain postpartum therapy. Ocrelizumab (n=44) received the most mentions among posts with known DMTs (n=181), followed by glatiramer acetate (n=41) and natalizumab (n=29). Most ocrelizumab and glatiramer acetate remarks were about safety and were rated neutral to positive. At the congress, more results were revealed. Preliminary outcomes demonstrated that women with MS use social media to discuss, share, and better understand treatment alternatives during family planning. It was unclear if women with MS use social media because they wanted more peer support or didn’t have enough time to go to their doctors. The study aimed to promote awareness among HCPs about critical issues and educational gaps in women with MS and encourage proactive family planning discussions as part of routine care.