How Women With MS Use Social Media for Pregnancy Concerns

A study presented at the recent Consortium of Multiple Sclerosis Centers (CMSC) annual meeting looked at how women with multiple sclerosis engage with one another on social media platforms to discuss and share knowledge during the family planning phase of their lives.

In this exclusive MedPage Today video, lead study investigator Riley Bove, MD, of the University of California San Francisco Weill Institute for Neurosciences, discusses some of the interesting findings.

Following is a transcript of her remarks:

Just as background, as many people are well aware, multiple sclerosis affects three times more women than men. And it has typical onset in the 20s, 30s, 40s — so decades where patients may want to start a family or continue a family. And although we have many, many therapies now approved for multiple sclerosis — and that do a wonderful job of controlling disease activity — we don’t know as much about which treatments are truly safe and how to administer these treatments when people are planning a pregnancy or in the postpartum period.

And so the goal of this study was to figure out what patients are talking about, what they’re asking one another outside of their clinical encounters, what are the top themes. And to see whether there are any gaps in communication, research, or other that we need to be thinking about as we gauge the safety of these therapies and communicate the safety of these therapies to patients.

It’s true that when you’re looking at a post, you never know whether that’s a post that’s completely legitimate, and that’s informed by science, or whether that’s a post like the toddler the other day who ordered 31 cheeseburgers on his mom’s account. We don’t know what’s happening for real. And so the other thing that we looked at were posts from sites that sometimes, as more sort of cautious risk-averse neurologists, we advise patients to steer away from. We say don’t go looking at Dr. Google or at these sites, because we don’t know about the quality of the evidence.

What was interesting to me was that actually the information content of the posts actually reflected where the science is going, with which products are considered more safe, more reasonable to consider either prior to pregnancy or during a pregnancy. And so overall I found that the posts were quite reasonable. There was a lot of recommendation that patients go back to their individual clinician and talk more. And so they certainly weren’t kind of trying to divert patients away from medical care and onto sort of some fantastical theories. The posts were quite reasonable and quite backed by science.

We used social media listening or SML to look at a bunch of posts online. And we did that through a specific company. And the company was able to look at publicly available posts from certain open access sources, such as Twitter, Tumblr, Reddit, etc. But not from Facebook and Instagram. And these posts seemed to really kind of pick up in the last few years, and there’s a couple hypotheses to that.

One is: Are people going to social media because they’re not seeing their doctors as frequently, as a consequence of COVID-19? One sort of thought about that argument or hypothesis is that we might have seen those posts pick up even a little earlier, sort of at the height of the shelter in place. Another alternative hypothesis is that there’s a bit of a baby boom. And so early in the COVID-19 pandemic, there’s been sort of a concern for a baby bust, where there was fewer pregnancies, fewer births. And then perhaps things sort of picked up a little bit. And so there’s more interest in these treatments, as the pandemic kind of preceded. And finally, maybe this just reflects general trends in social media use independent of whether or not people are seeing their doctors.