Unplanned pregnancies highlight gaps in care for NMOSD women
Study: Many may become pregnant without fully understanding potential risks
More than half of women with neuromyelitis optica spectrum disorder (NMOSD) have never discussed pregnancy with their neurologist, and over 40% report that their pregnancies were unplanned, according to data from a survey-based study in Argentina.
This lack of communication means that many women with NMOSD may enter pregnancy without fully understanding the potential risks, and without the chance to adjust their treatment to safer options for their babies or to stabilize disease in advance to reduce relapse risk.
“Although NMOSD does not contraindicate pregnancy, informed decision-making is important to optimize outcomes,” researchers wrote, emphasizing that family planning should be integrated into routine care so women with NMOSD can make safe and informed choices about motherhood.
The study, “Knowledge, concerns and experiences regarding family planning and pregnancy in NMOSD: A cross-sectional study from Argentina,” was published as a commentary in the journal Multiple Sclerosis and Related Disorders.
NMOSD marked by relapses
NMOSD is an autoimmune disorder that causes damaging inflammation to the spinal cord and optic nerves, which carry visual information from the eyes to the brain. This results in muscle weakness, vision problems, and other symptoms.
The disease is marked by a relapsing course, where repeated attacks, or relapses, directly contribute to the accumulation of permanent disability.
It mostly affects women, and it is usually diagnosed during women’s reproductive years, “raising important questions about the risks and considerations of pregnancy in this population,” the researchers wrote.
NMOSD treatments are designed to keep the immune system under control and prevent relapses, but some of these medications may be unsafe to use during pregnancy because they could harm the baby. Moreover, stopping treatment can increase the risk of relapses, as can pregnancy itself.
Therefore, it is essential for women with NMOSD to receive clear guidance and support when planning a pregnancy, the researchers wrote. Careful discussions about treatment options, timing, and potential risks can help balance disease control with the safety of both mother and child.
“There is limited data evaluating [family planning] in NMOSD patients globally, including in Latin America,” the researchers wrote.
Communication with doctors among gaps in care
To help close this gap, a team of researchers in Argentina carried out an anonymous, web-based survey in the country between January and March 2024. A total of 105 women with NMOSD completed the survey.
The questionnaire asked about pregnancy experiences before and after diagnosis, whether pregnancies were planned or unplanned, what kind of advice patients had received from their doctors, and how treatment decisions were influenced by the desire to have children.
The women’s mean age was 42.4 years, and they had been living with NMOSD for a mean of 7.5 years. Disability level was generally mild, and one-third (33.3%) had experienced a relapse in the previous year.
Before being diagnosed with NMOSD, 39.1% of women had been pregnant, and about 13.3% of these pregnancies ended in miscarriage. After diagnosis, 12.4% of women became pregnant, with miscarriages occurring in about 15.4% of these cases.
Despite nearly a third (30.8%) of women expressing a desire to have children after their diagnosis, only eight adjusted their treatment in preparation.
These results underscore an urgent need to incorporate [family planning] discussions into routine clinical practice.
Communication with doctors emerged as a major gap, as more than half (55.2%) of the women said they had never discussed pregnancy with their neurologist, and only one-third (32.4%) reported being advised to plan their pregnancies ahead of time. As a result, unplanned pregnancies were frequent, making up 43.9% of all reported cases.
“This discrepancy suggests that many NMOSD patients may conceive without adequate risk assessment, which could compromise maternal and fetal outcomes due to suboptimal disease control or … exposure [to drugs that may harm the baby],” the researchers wrote.
Also, 11.4% of women were told not to pursue pregnancy at all, most commonly due to their neurologists’ concerns about the potential effects of therapy on the fetus (40.9%). Other reasons mentioned by neurologists included concerns about previous aggressive disease course, known as persistent sequelae (27.3%), the possible impact of pregnancy on NMOSD (22.7%), and concerns about the effect of NMOSD on pregnancy (9.1%).
“These results underscore an urgent need to incorporate [family planning] discussions into routine clinical practice,” the researchers wrote, highlighting that better counseling could not only “reduce the rate of unplanned pregnancies, but also … ensure optimal timing and safety of conception.”
Because some NMOSD treatments are now considered safe to continue during pregnancy, and stabilizing the disease beforehand can reduce risks, not discussing these issues with patients represents “a missed opportunity for shared decision-making and safe motherhood,” they wrote.
“As most patients are women of reproductive age, addressing reproductive goals should become a standard component of NMOSD care, aligned with evolving treatment guidelines and patient-centered practices,” the team concluded. “Future research should develop standardized guidelines to support informed reproductive choices in NMOSD patients.”
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