Many women with MS have misconceptions about pregnancy

Many women with multiple sclerosis (MS) have misconceptions or a lack of information about how the disease may affect pregnancy and childbirth, and healthcare providers rarely broach the topic, a study found.

The findings suggest that women with MS may be making decisions about family planning based on incorrect assumptions or inaccurate information. The researchers called for MS clinicians to be more proactive about discussing pregnancy and family planning with their female patients.

“Although pregnancy is now widely recognized as safe and feasible for women with MS—with consistent evidence showing no adverse effects on disease prognosis or infant outcomes—our findings suggest that the diagnosis of MS still significantly influences reproductive decision-making,” the researchers wrote.

The study, “How misinformation affects family planning choices for women with multiple sclerosis,” was published in Patient Education and Counseling.

MS disproportionately affects women, and it often manifests in early adulthood, when many people may be considering starting or growing families.

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MS activity tends to decline in people who are pregnant, though there can be a so-called rebound effect in which disease activity increases in the months after pregnancy ends.

A few MS treatments are considered safe for use in pregnancy, but others are not, and for most MS therapies, there isn’t robust data to support their use during pregnancy.

A team of scientists wanted to better understand what women with MS understood about their own disease and how their understanding may influence decisions about family planning.

They surveyed 200 women with MS, ages 18 to 45. The survey consisted of a quiz with statements about MS and pregnancy, as well as questions about individual preferences and concerns regarding family planning. Participants were also asked which sources they used to gather information about pregnancy and MS.

Survey results showed that most of the women — 118 of the 200 — reported that MS had in some way affected their decisions about pregnancy and family planning. They often said MS affected the timing of pregnancy or the number of children they wanted to have. Nine patients said they had chosen not to pursue parenthood as a direct result of MS.

When women reported that MS had not affected their family planning decisions, this was often because those women already had children before they were diagnosed, “likely reflecting a perceived completion of their family plans,” the researchers said. “In contrast, women without children reported greater disruption in family planning. Importantly, however, the diagnosis alone did not necessarily lead to a definitive rejection of future motherhood.”

Among women for whom MS had disrupted family planning, the most commonly cited concerns included worries about worsening MS activity after childbirth, concerns that future children might have a genetic predisposition to MS, and worries about unintended consequences from MS treatments on the developing fetus.

The quiz portion of the survey revealed that many of the women had substantial misconceptions surrounding MS and pregnancy. In fact, the majority reported incorrect beliefs or said they lacked information about the safety of MS treatments during breastfeeding, the effects of MS in their children, and the risk of their children developing MS.

Lack of information or misunderstanding was also common for topics related to disease activity during pregnancy.

The high rate of misconceptions is likely at least partly attributable to a lack of reliable counseling from healthcare providers, the researchers said. Fewer than one in four of the women reported receiving counseling about MS and pregnancy from their clinical team — and on the rare occasions when these conversations did take place, it was mostly because the women brought up the topic.

The findings underscore the importance of MS clinicians being proactive in discussing family planning with their female patients, enabling them to make informed decisions based on accurate information, the researchers said.

“This study highlights that, despite robust evidence supporting the safety of pregnancy in women with MS, the diagnosis continues to significantly influence reproductive decisions,” the team wrote. “Persistent concerns regarding disease exacerbation, risk of MS development in offspring, and treatment-related risks, alongside notable knowledge gaps, underscore the need for structured, evidence-based counseling.”