Review Highlights Substantial Knowledge Gaps in Women’s Health in MS

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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There has been a marked increase in the amount of research done regarding women’s health in multiple sclerosis (MS) over the last decade or two, but there remain substantial gaps in scientific knowledge, especially for topics outside of pregnancy, according to a scoping review.

“Future studies are needed that focus more on understudied topics such as menopause, sex hormones and cancer screening,” the researchers wrote, noting that one-third of all studies reviewed focused on pregnancy.

In particular, the team stressed the need for such studies “to include participants with a broader range of races and ethnicities, with progressive MS, and living in Asia-Pacific and African regions.”

The study, “Women’s Health in Multiple Sclerosis: A Scoping Review,” was published in Frontiers in Neurology.

Health issues that mainly affect women have historically been largely ignored by academic research, limiting the information available to women and their healthcare providers. However, in recent decades, more and more research is shifting to focus on the unique perspectives and challenges of women.

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Like many other autoimmune diseases, MS primarily affects women, and women with MS may face unique challenges such as navigating pregnancy or menopause while living with the chronic condition.

“One area where women’s health research is of particular importance is within the context of chronic disease management,” the researchers wrote.

Now, this international group of researchers — most working in the U.S., Canada, and Europe — conducted a review to summarize the existing research on women’s health in MS, and to highlight areas where more needs to be learned.

“While research surrounding the experience and management of women’s health issues in MS has increased over time, women living with MS, clinicians, and researchers recognize that knowledge gaps remain,” the team wrote.

“The purpose of this scoping review was to map the literature broadly related to topics relevant to women’s health in MS to inform the clinical and research communities about the existing types and sources of evidence and knowledge gaps,” they added.

The scientists assessed a total of 353 studies, published from 1983 to 2020. Most of the studies were relatively recent; the team noted that “the number of studies regarding women’s health has increased exponentially over time.”

Notably, coverage of women’s health issues in MS did not markedly increase “until around the turn of the millennium,” the researchers wrote, noting that “in 2004 for the first time the number of studies relating to women’s health issues in MS reached 10.” In 2020, 45 studies on women’s health issues in MS were done in a single year.

The number of study participants ranged from two to nearly 100,000, with a median of 130. Most studies did not report the racial makeup of participants. About three-quarters of the studies (78%) focused exclusively on women with MS. A few were centered on children born to parents with MS or included other diseases, and the rest included men or non-binary gender identities with MS.

Most of the studies were conducted in Europe or North America, and the majority focused on relapsing-remitting MS. The researchers highlighted a need to address women’s health in people with progressive MS, as well as a need for more diverse populations in studies.

Among the hundreds of studies, the researchers identified 509 individual topics addressed by studies, noting that some studies addressed multiple topics.

Among the topics, more than a third (37.2%) were related to pregnancy — topics such as relapses during pregnancy, complications related to pregnancy, and decisions about treatment during pregnancy. A further 14.4% of topics were related to fetal or neonatal outcomes, which the researchers noted is “closely related to the topic of pregnancy.”

The third most common issue addressed, by about 10% of studies, was sexual dysfunction.

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“Most other topics, including menopause, birth control, assisted reproduction, cancer screening, and gender identity, received little attention,” the researchers wrote.

The focus on pregnancy may not be surprising, given the importance that pregnancy has in the lives of many women and the impact of MS on pregnancy and vice versa. Nonetheless, the team noted that some large knowledge gaps about MS and pregnancy remain — in particular, the team noted a lack of evidence for the safety and efficacy of MS treatments when used during pregnancy, as most clinical trials exclude pregnant and breastfeeding women.

“The exclusion of pregnant and breastfeeding women from clinical trials, while customary in situations where there are prominent concerns for [harm to the developing fetus], continues to limit the type of evidence and timing of available information to clinicians and persons with MS surrounding pregnancy and breastfeeding,” the team wrote.

Compared with pregnancy, the researchers said that the topic of menopause has “received surprisingly little attention.” In this scoping review, only 10 studies touched on this broad topic, even though menopause will be experienced by the vast majority of women with MS at some point in their lives.

“There remains an opportunity to further the understanding of interactions of MS and menopause to help guide women with MS and provide additional insights about hormonal influences in MS at large,” the team wrote.

The team also highlighted a need for further research on contraception and assistive reproduction in MS patients, as well as the risk of breast cancer.

Beyond these health topics, the team added, “there are other issues relevant to women living with MS that we did not consider in our review such as domestic violence particularly in the context of women with physical or cognitive impairments.”

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