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Women with MS used social media to discuss and better understand disease-modifying treatment (DMT) options during pregnancy and lactation, a social media listening (SML) analysis found.

Social media posts included doubts about MS treatment, general discussions about MS and pregnancy, and questions about whether to delay treatment due to safety concerns, reported Riley Bove, MD, of the University of California San Francisco Weill Institute for Neurosciences, in a presentation at the Consortium of Multiple Sclerosis Centers (CMSC) annual meeting.

"There has been a general lack of clarity about MS DMT safety during pregnancy and lactation, with guidance varying between EMA [European Medicines Agency] and FDA labels for similar products, between clinicians, and as we continue to learn from real-world data," Bove told 番茄社区app. "As a consequence, we know that patients with MS receive variable messaging from their clinicians on this topic. Our interest was to learn to what extent they also reach out to others via social media, and what themes were most important for them to discuss."

About half of the women in the study currently were pregnant or breastfeeding, Bove noted.

"What we observed was that patients turned to social media even when they mentioned having a good relationship and good communication with their MS neurologist," she noted. "Their perceptions of product safety were fairly in line with emerging real-world evidence."

"One surprising lesson for me was that, while I often guide patients away from social media platforms due to lack of scientific oversight and the possibility that patients may receive poor advice, the posts mostly showed people asking important questions about risks and experiences during pregnancy, and sharing information that showed real engagement with what the real-world data are telling us," she stated.

Bove and colleagues used the SML platform Brandwatch to identify posts about DMTs in MS patients of childbearing potential. All extracted data were subjected to manual validation and interpretation.

Posts came from publicly available, open-access sources including Twitter, Tumblr, Reddit, forums, blogs, and YouTube. Facebook and Instagram posts were not used.

Bove's group manually analyzed 1,860 posts from January 2019 to February 2022 and identified 471 posts specific to MS and pregnancy.

The number of social media posts increased significantly after the third quarter of 2020, Bove noted. Reddit had the highest number of posts (about 53%), followed by various forums and Twitter.

The study included 116 women who were planning pregnancy, 227 who were pregnant or breastfeeding, and 94 who were post-pregnancy. Across all groups, about half the posts expressed neutral sentiments and 28% showed positive sentiments.

Most women shared experiences or MS-related information in their posts. Of those who talked about their relationship with their clinician, 86% said they had good communication and trust.

In total, 299 posts were related to specific DMTs. Among women who currently were pregnant or breastfeeding, most posts expressed doubts about DMTs or plans to switch medications; a few discussed avoiding DMTs because they were perceived as unsafe.

It's unclear whether social media engagement occurs because women want additional peer support or because their communication with their clinician is insufficient, Bove observed.

"These SML results show that female people have different needs during different stages of family planning, which should be considered when counseling," she said.

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