Family Planning in MS: A Gap in Patient Knowledge

Senior healthcare worker talking to couple. Male doctor is holding digital tablet. They are discussing in hospital.
Research highlights the need for healthcare professionals to proactively and directly address the issues and risks of DMTs in terms of MS patients’ family planning activities.

Highly potent disease-modifying therapies (DMTs) represent a major advancement in the treatment of individuals with multiple sclerosis (MS). While such new therapies are improving the lives of many, their impact on a patient’s plans to start a family are only now being examined, and an information gap is emerging.

Studies show that interferon-beta therapies (Avonex, Rebif, Betaseron, Extavia) are associated with lower mean birth weight, shorter mean birth length, and preterm birth.

The effects of newer oral DMT (Gilenya, Aubagio, Tecfidera) exposure during pregnancy remain inconclusive as clinical trial data and long-term, real-world observations are limited.

Other studies have found no association with glatiramer acetate (Copaxone) exposure and low mean birth weight, congenital anomaly, preterm birth, or spontaneous abortion. Further, natalizumab (Tysabri) exposure showed no association with short mean birth length, low mean birth weight, low mean gestational age, malformations or abortion. Another study found no variation in the rate of spontaneous abortions for pregnancies in which the fathers had MS and were receiving either interferon-beta or glatiramer acetate compared to fathers with MS not receiving either therapy.

In short, the effect of DMTs on fetuses varies with each treatment. However, based on animal reproductive studies, several newer DMTs are contraindicated in patients during pregnancy. Some even highlighting the risk of transmission via semen from male patients with MS. Varying teratogenic effects among DMTs underscores the importance of counseling patients with MS regarding the potential risks of each therapy so as to the appropriate choice is made when it comes to family planning.

Do Patients Understand the Risks Associated With MS Treatments?

A Danish study sought to examine the level of awareness and attitudes of patients with MS of childbearing age. The survey was completed by 488 women and 102 men with MS, 67% of whom had been treated with 1 or 2 DMTs since being diagnosed. The remainder of respondents received 3 to 5 different DMTs. Of the 590 participants, 71% already had children. Of those without children, 50% wanted to start a family.

Findings show 74% of male respondents and 42% of female respondents didn’t know if DMTs could affect the fetus if a pregnant woman with MS was undergoing treatment. Moreover, 4% of male respondents and 14% of female respondents stated that they thought all drugs used for MS would affect a fetus equally. Overall, 61% of respondents said that a drug’s effect on a fetus would impact their choice of DMT during a pregnancy.

When asked if a DMT could be transmitted from a male MS patient to his healthy female partner and then to the fetus, 85% of male respondents and 83% of female respondents were unsure. The majority of both sexes (95% of men and 96% of women) responded “don’t know” or that “there is no risk” for transmitting teratogenic DMT to a female partner.

In the group who had children after their MS diagnosis, 47% responded that they felt inadequately informed about treatment possibilities for MS while planning to start a family, and 53% said they didn’t feel that they had easy access to information about treatment possibilities.

The study found 10% of female respondents with MS experienced an unplanned pregnancy while receiving treatment with DMTs. Of the 47 who experienced unplanned pregnancies, 23 of tried to carry through the pregnancy, 15 stopped treatment and completed pregnancy, 4 continued treatment but had spontaneous abortions, and 4 stopped treatment but had spontaneous abortions.1

“This highlights the need for careful consideration of choice of DMT not only in women planning pregnancy but in all fertile women,” said study author Peter Vestergaard Rasmussen, Aarhus University Hospital, Denmark.

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Where Are MS Patients Getting Their Information?

Despite a significant portion relying on their healthcare providers for information regarding the potential teratogenic effects of DMTs, the internet continues to be an important source of information — and potentially misinformation — for patients. The study found that among women with MS, 41% obtained their information from their MS neurologists, 34% relied on MS nurses, 34% utilized the internet, and 16% turned to social media.1 Among men with MS, 51% reported using “other sources” for information, 27% reported using the internet, 22% consulted their MS neurologist, 17% relied on their MS nurse, and 13% turned to social media for answers regarding the potential effects of their MS treatment.1

“Healthcare professionals (the neurologist and the MS nurse) represented the most frequently used and important sources of information about MS in general, but for the information related to the potential teratogenic effects of DMTs, the respondents turned to the internet, social media, and other sources just as often as to their healthcare professionals,” explained Rasmussen. These findings point to an unmet need to specific information regarding MS treatment and family planning.

An Opportunity for MS Clinicians

Rasmussen and colleagues’ research highlights the need for healthcare professionals to proactively and directly address the issues and risks of DMTs in terms of MS patients’ family planning activities. Rasmussen concluded “The increasing number of potent DMTs and the low-level knowledge among patients calls for increased focus on the topic from the healthcare professionals.”


Rasmussen PV, Magyari M, Moberg JY. Patient awareness about family planning represents a major knowledge gap in multiple sclerosis. Mult Scler Relat Disord. 2018;24:129-134.