Women diagnosed with multiple sclerosis (MS) say they lack guidance regarding family planning, pregnancy, and breastfeeding, according to a survey. Sixteen percent of those women also reported they didn’t become pregnant due to MS-related concerns.
Casey E. Engel, clinical researcher at Weill Cornell Medical College in New York, presented the survey results at the 4th Annual Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum, which ran from Feb. 28 to March 2 in Dallas, Texas. Her poster presentation was titled “A Survey Study of Pregnancy-Related Issues in Multiple Sclerosis Patients: The Patient’s Voice.”
MS occurs more frequently among women age 20 to 40, which coincides with the optimal period of fertility, highlighting the need to understand how MS diagnosis affects decisions about pregnancy, and what guidance is provided by clinical staff to these patients in terms of family planning.
Researchers surveyed female MS patients to determine their experience regarding family planning, pregnancy, and breastfeeding after their diagnosis.
A total of 1,000 surveys were sent to women age 18 to 65 who had a confirmed MS diagnosis and had visited a clinic at least once. Of the 174 respondents, 70 percent were receiving MS specialty care.
A total of 137 of the respondents didn’t become pregnant after getting the MS diagnosis. In 22 of these cases, participants reported that decision was due to concerns related to their disease; 63.6% believed that MS symptoms would worsen with pregnancy; 45.5% had concerns regarding their ability to care for a child while managing their MS; 18.2% had no knowledge regarding options for pregnancy and MS; another 18.2% indicated concerns about passing MS onto their child; and 9.1% had concerns about stopping disease-modifying treatment while attempting to become pregnant.
Among women who had a pregnancy after MS diagnosis (36 women), 20% reported post-partum depression or anxiety, a value higher than the 10–15% average of pregnant women in America.
The majority of the women who became mothers after MS diagnosis also indicated they received inconsistent advice about stopping disease-modifying treatment from 0 to 6 months before attempting to become pregnant.
Regarding breastfeeding, 71% reported breastfeeding for between 0.25 to 10 months. This breastfeeding duration range was due, in part, to a variability in guidelines regarding the restart of disease-modifying treatment.
Overall, these observations highlight the difficulties and concerns of the MS community regarding pregnancy, and show alarming results on the clinical guidance provided to female MS patients, the researchers concluded.
“Our study illustrates that MS patients receive a wide variety of advice, guidance, and engagement from their healthcare providers regarding family planning and pregnancy-related decisions, such as breastfeeding and medication management,” they wrote.
“We believe that the variability seen in our small population from one center reflects the larger experience of women around MS treatment and motherhood,” they added.
According to the team, the results call for a discussion about these topics in the MS community in order “to improve the individual patient experience” and care.