Perceptions and Discussions on the Use of Disease-Modifying Therapies during Family Planning in Women with Multiple Sclerosis

Background: Multiple sclerosis (MS) is often diagnosed in women of childbearing age. While multiple disease-modifying therapies (DMTs) are available, most are not approved for women who are pregnant, trying to become pregnant or breastfeeding. Where available, practice guidelines vary by region, and advice can differ between healthcare providers (HCPs). Pregnant or lactating women with MS must weigh potential risks to themselves and their offspring, as discontinuation of DMTs can lead to disease activity and progression.

Objectives: To gain insight into perceptions and discussions on the use of DMTs during pregnancy or lactation in women with MS via social media listening (SML).

Methods: The SML platform Brandwatch was used to search select websites for prespecified keywords and fetch English mentions of DMT use in women with MS from August 18, 2020, to August 18, 2021, as a preliminary analysis. Open-access sources used included Twitter, Tumblr, Reddit, forums, blogs and YouTube. Mentions were validated and, when possible, manually tagged to identify women who had been, were currently or were planning to become pregnant or breastfeed. The sentiment of each mention was manually categorized as positive, neutral or negative.

Results: Of 2437 total mentions, 585 unique mentions were analyzed manually, of which 255 related to DMTs. Major themes in women planning pregnancy (n=77) or currently pregnant/breastfeeding (n=127) were doubts around or delay in treatment due to safety-related concerns, although DMTs were noted to be perceived as safe when recommended by HCPs. Mentions from women who had been pregnant (n=34) expressed eagerness to receive treatment post partum. Among posts with known DMTs (n=181), ocrelizumab had the most mentions (n=44), followed by glatiramer acetate (n=41) and natalizumab (n=29). Most mentions of ocrelizumab and glatiramer acetate related to safety and were categorized as neutral to positive. Further results will be presented at the congress.

Conclusions: Preliminary results show that women with MS use social media to discuss, share and better understand treatment options during family planning. It is unclear if social media engagement occurs due to a desire for additional peer support or insufficient discussion between women with MS and their HCPs. This study aims to raise awareness among HCPs around key concerns and educational gaps in women with MS and encourage proactive discussion around family planning as part of routine care.