Women With MS Utilize Social Media to Discuss, Share Safety Concerns on DMT Use During Pregnancy

NeurologyLiveAugust 2022
Volume 5
Issue 4

Investigators utilized a social media listening tool to evaluate and scale mentions of disease-modifying therapy use by women with multiple sclerosis, with the majority of concerns focused on safety and treatment reinitiation in the postpartum period.

Riley Bove, MD, associate professor of neurology, UCSF Weill Institute for Neurosciences

Riley Bove, MD

The preliminary results of a study of women with multiple sclerosis (MS) suggest that these individuals engage with one another on social media platforms in discussion and knowledge sharing practices to better understand their treatment options during the family planning phase of their lives.1

The group of investigators, led by Riley Bove, MD, associate professor of neurology, UCSF Weill Institute for Neurosciences, utilized the social media listening platform Brandwatch to assess 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 from August 18, 2020, to August 18, 2021. Each mention of keywords was categorized by its sentiment, defined as positive, neutral, or negative; these were 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. Their findings were presented by Bove at the 2022 Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, June 1-4, in National Harbor, Maryland.

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 (HCPs). Of those women who had been pregnant (n = 34), most of the mentions related to eagerness for treatment in the postpartum period.

Bove et al wrote that it was unclear if this social media engagement was occurring out of a desire for additional peer support, or from a lack of sufficient discussion between women with MS and their physicians. “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,” they wrote.

When asked about the concerns about potential poor communication between physicians and patients, Bove told NeurologyLive®, “most people posting reported pretty positive sentiments toward their clinicians. They weren’t going [on social media] because they were upset or distrustful, they were going there to augment and enrich their knowledge and the support they got.”

Bove also expressed her surprise at the positivity expressed by some individuals about certain medications during their pregnancy and lactation periods. Among the posts that mentioned known DMTs (n = 181), ocrelizumab (Ocrevus; Genentech) had the most mentions, with 44, followed by glatiramer acetate (Copaxone; Teva Pharmaceuticals), with 41, and natalizumab (Tysabri; Biogen), with 29. The majority of the mentions of ocrelizumab and glatiramer acetate were related to safety and were categorized by Bove et al as neutral to positive.

“For a long time, we’ve really abandoned these patients—we know that they’re at a very high relapse risk postpartum. Not everybody, but about one-third of people have relapses postpartum and about half have new brain lesions, even in the absence of relapses,” Bove said. “This is a population that is one of the most at risk, period, for relapse in the whole clinical course, and we’ve basically said that, ‘Well, it’s unethical to treat you, so either you breastfeed or your start your meds,’ or ‘stop your meds, even if you’re going to have a rebound.’ We always assume that the patients don’t want any drug exposure whatsoever, and in fact, what you see is that they’re quite nuanced. They interpret the risks, and they learn that some medicines are safer than others. Seeing patients really grapple with that information, with the real-world data, and then convey that information to others, I think, was really positive.”

READ MORE: Herpes Simplex Virus Types Not Associated With Increased Risk of Multiple Sclerosis

The investigators acknowledged that MS is often diagnosed in women of childbearing age but noted that “while multiple [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 [HCPs].” As such, women with MS who are pregnant or lactating are often forced to weigh potential risks to their health and that of their offspring, as treatment discontinuation of DMTs can result in disease activity and progression.

This study is one of many in a growing group of literature to evaluate the effects of MS and treatment with DMTs in individuals who are of childbearing age or pregnant. In July 2021, findings published in Neurology suggested that natalizumab might be an effective treatment option to minimize the risk of postpartum relapses in pregnant women with MS who pause DMT treatment during pregnancy. This finding was particularly relevant for those at low risk of progressive multifocal leukoencephalopathy.2

In that work, Vilija G. Jokubaitis, PhD, senior research fellow, Department of Neuroscience, Monash University Data Futures Institute, and others in the MSBase Study Group found that in their cohort of 1619 women and 1998 pregnancies, DMT reinitiation with natalizumab protected against postpartum relapse (HR, 0.11; 95% CI, 0.04-0.32; P <.0001). Continuation of natalizumab use into pregnancy, on the other hand, reduced the odds of relapse during pregnancy (odds ratio [OR], 0.76 per month; 95% CI, 0.60-00.95; P = .017).

Overall, reinitiation with high-efficacy DMT was independently protective against postpartum relapse and reduced the hazard of relapse by 88.9% (HR, 0.111; 95% CI, 0.0382-0.322; P <.0001 compared to no treatment reinitiation). Additionally, those who breastfeed were also less likely to experience disease relapse (HR, 0.61; 95% CI, 0.41-0.91; P = .016).

Additionally, in March 2022, data published in the Multiple Sclerosis Journal by Christiane Gasperi, MD, physician and researcher, TUM School of Medicine, Technical University of Munich, and colleagues, suggested that pregnancies were associated with a lower risk of MS and might offer protective benefits for women.3

After identifying several less pregnancy-related International Classification of Diseases, 10th Revision (ICD-10) codes among women with multiple sclerosis (MS) than those without autoimmune disorders, results from a retrospective case-control study showed that.

Gasperi and colleagues aimed to determine the relationships between pregnancies and gynecological diagnoses with MS risk by observing differences in gynecological ICD-10 code recording rates. The sample included women with MS (n = 5720), Crohn disease (n = 6280), or psoriasis (n = 40,555) and women without these autoimmune diseases (n = 26,729) in the 5 years before diagnosis.

Click here for more coverage of CMSC 2022.

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.
2. Yeh WZ, Widyastuti PA, Van der Walt, A, et al. Natalizumab, fingolimod, and dimethyl fumarate use and pregnancy-related relapse and disability in women with multiple sclerosis. Neurology. 2021;96:e2989-e3002. doi:10.1212/WNL.0000000000012084
3. Gasperi C, Hapfelmeier A, Schneider A, et al. Association of pregnancies with risk of multiple sclerosis. Multiple Sclerosis Journal. Published online March 18, 2022. doi:10.1177/13524585221080542.
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