Practice Points
- People with multiple sclerosis (MS) face unique uncertainties during and around pregnancy, including uncertainty about the future, the symptoms they experience, and information availability.
- Providers may decrease this uncertainty by addressing information gaps surrounding safety and timing of disease-modifying therapies, establishing clear plans with provider recommendations, coordinating care across the reproductive health team, and providing anticipatory guidance for seeking care.
- Uncertainty may negatively impact the mental health of pregnant people with MS, necessitating screening for mental health changes and provision of social and mental health support.
Multiple sclerosis (MS) is more prevalent in women, with a 3:1 female-to-male ratio.1 Pregnancy planning is crucial for people with MS, as they are often diagnosed during their peak reproductive years. Surveys of women with MS show that MS affects family planning decisions,2 and they report that they have inadequate information on their ability to have children, treatment options, and the risk of relapse in pregnancy.2-5 MS has been associated with higher levels of childlessness,6 suggesting that a lack of information and concerns about childcare abilities may affect reproductive decision-making.7 Because the topic of family planning is infrequently addressed by neurologists,8 pregnancy management in MS remains an area of unmet need.
Some of the challenges that people with MS face in family planning are due to the unpredictable course of MS and unclear guidelines on managing MS during pregnancy. For people with MS whose disease is well-controlled with
disease-modifying therapies (DMTs), pregnancy can introduce uncertainty regarding the timing and safety of treatment before, during, and after pregnancy. Although relapse risk decreases in the third trimester, this risk increases in the first 3 months post partum.9 Having a short-term plan to conceive has been shown to impact DMT selection,8 because different treatments carry varying safety profiles that affect pregnancy and lactation. These factors necessitate careful pregnancy planning.
Qualitative studies exploring pregnancy and motherhood in people with MS highlight information gaps and the need for holistic, multidisciplinary care.10-17 Uncertainty impacts mental health,18 and for those with chronic conditions, reproductive uncertainty has been reported as a barrier to considering pregnancy and affects emotional and psychological well-being.19 For these reasons, further exploration of the relationship between uncertainty and mental health in people with MS during pregnancy is needed. Our aim is to explore pregnancy experiences to identify opportunities to improve clinical care.
Methods
People with MS with current or prior pregnancies who received medical care from a single MS specialist (S.S.) at the Duke Neurological Disorders Clinic were identified via electronic medical record and recruited by phone call. Interviews were conducted by a researcher with no prior relationship with the participants (V.C.). Basic information, including current age, sex, age at initial diagnosis, MS treatment history, and obstetric history, was reviewed before the interview to guide discussions and supplement data collected from participants. Study approval was obtained from the Duke University Institutional Review Board, and informed consent was obtained following their protocols.
From November 2023 to January 2024, semistructured, in-depth interviews were conducted using videoconferencing software, each lasting 1 hour. The interview guide, developed by 2 researchers (V.C. and S.S.), explored participants’ experiences with MS and pregnancy, facilitators and barriers in family planning, and information and resource needs. Follow-up questions allowed the deeper exploration of topics introduced by participants. After the interview, a memo summarizing the interview and initial themes was written. Interviews were fully recorded and autotranscribed using the videoconferencing software. All transcripts were deidentified and verified by the interviewer using the audio recordings. Data collection continued until thematic saturation was reached. After reviewing several transcripts, a codebook of themes was developed and iteratively refined throughout the coding process. Thematic analysis was conducted inductively with an emphasis on lived experiences and resource needs. All transcripts were independently coded using NVivo 12 and 14 (Lumivero) by the same 2 researchers. Coding discrepancies were resolved by consensus. Representative quotes were selected to highlight the main themes and subthemes.
Results
Ten participants were interviewed between November 2023 and January 2024. The characteristics of participants are summarized in Table 1. The mean age of participants was 35 years (range, 26-40) with a mean of 6 years since diagnosis (range, 1-12). The mean number of pregnancies was 2, and the mean number of children per participant was 1.3. All identified as cisgender women.
Three dominant themes emerged regarding the uncertainty participants faced in pregnancy: (1) anticipation of the future; (2) symptoms experienced; (3) availability of information. The Figure summarizes the dominant themes and subthemes.
These themes emerged in the context of a negative impact on mental health, including discussions of postpartum depression, anxiety, feelings of guilt, and isolation. Most participants experienced mental health challenges (n = 7, 70%) and/or discussed utilizing mental health resources (n = 8, 80%), such as talk therapy, psychiatric medications, nurse phone lines, MS support groups, and other support systems.
Anticipation of the Future
Relapses: Prepartum, Intrapartum, Postpartum
Participants were aware of a decreased relapse risk during pregnancy and were counseled to pause their DMTs. However, the period of DMT cessation prior to pregnancy brought significant uncertainty regarding relapse likelihood. Some participants discussed being able to become pregnant relatively quickly after medication cessation, so they were able to avoid difficult decisions regarding continuing to attempt conception versus restarting their DMT.
Most participants reported MS symptom improvement during pregnancy, but the postpartum period was a source of anxiety due to the possible return or even worsening of MS symptoms. Participant 7 described her anticipation of a postpartum relapse.
“It was like a ticking clock in my head…'OK, you’re not on medicine yet,' holding your breath in a way, to make sure…. ‘Am I going to start getting a new lesion? Am I going to feel bad again?’”
Participants expressed the desire to breastfeed for as long as possible. In consultation with their MS specialist, many chose to breastfeed for a limited time before resuming their DMT, weighing this against the risk of a postpartum relapse. Participant 4 described her anxiety about possibly having a postpartum relapse when she had not yet resumed her DMT while breastfeeding.
“MS was always in the back of my head, you know. Because I woke up and I was thinking, ‘OK, any day now.’ That was my biggest fear. Any day now, I could wake up and maybe not walk or maybe not be able to see.”
Impact of MS on Motherhood
Participants expressed uncertainty about the impact of MS on their ability to care for their children, particularly physically, because of the potential debility from MS symptoms impacting their long-term ability to remain active. Participant 9 and others worried about the impact of fatigue, weakness, and numbness on their ability to carry their babies, for instance.
“And new lesions. What would that look like? And then, you know, I think the scariest thing for me, too, was, will I be able to take care of him? How is this going to impact me?”
Health Care–Associated Factors
Participants also highlighted uncertainty related to health care access, including medication affordability, insurance coverage, and the logistics of managing appointments. Participant 7 worried that her insurance would not cover her DMT.
“I’m very nervous that I’m not going to be able to continue after this year is up because I can’t pay $100,000 a year and have 2 kids…. Do we…move to Canada where they cover [all of] it?”
Some also reported difficulties in coordinating care among different providers and hospital systems, which added to their stress. Participant 1 delivered her baby in a different hospital system, and the infusion her neurologist had planned for her to receive while she was an inpatient was denied by that system.
“They didn’t allow it. So you know, that was also very challenging because…we couldn’t do it then. And it’s just, it was just the wait…the waiting and seeing.”
Experienced Symptoms
Differentiating MS Symptoms From Normal Pregnancy
Participants struggled to distinguish between MS symptoms and pregnancy-related changes. Symptoms such as fatigue, numbness, tingling, and shooting pain were common sources of uncertainty, leading to anxiety about when to seek medical advice. Participant 8 described an example.
“My arms started to go numb…. I couldn’t move them. The frustrating part is the anxiety…. You can’t pinpoint like, well, this is your MS and here’s a drug for it. The baby could be on a nerve; the baby could be lying on something.”
Participant 2 described additional parallels between her MS symptoms and pregnancy.
“You can’t see your feet because you…have a big stomach, or you can’t feel them. You’re nauseous, you’re exhausted, your mood changes are weird, you’re sensitive to heat and cool, you’re sensitive to touch, like it’s very, very similar. So that is like a little bit of a mind-bend.”
Role of MS in Peripartum Challenges
A subset of participants faced additional challenges such as infertility, adverse birth outcomes, preeclampsia, and infections. This led to uncertainty about the role of MS and its treatments in these complications. This was Participant 6’s experience with infertility.
“Is the medicine what’s creating this infertility? …because I’ve taken so many different medications that I have a low egg count. Is it…my age? Is it the fact that I have an autoimmune disease?”
Both pregnancy and certain DMTs can create an immunosuppressed state. Participant 10 contracted a serious viral infection requiring hospitalization, which ultimately resulted in a pregnancy loss. She wondered if her DMT could have contributed to the infection and resultant outcome, and she worried about how she would navigate a future pregnancy.
“Did the MS treatment contribute at all to the risk of developing the [infection]? And I think it’s a question, unfortunately, no one can probably definitively answer, which I understand, but it definitely gives me a little bit of like, hmm, what am I going to do?”
Availability of Information
Insufficient Research
Participants cited limited research on MS and pregnancy as a significant source of uncertainty, particularly regarding the timing of DMTs and breastfeeding. Lack of data and the frequency of guideline changes made it difficult to make informed decisions, as noted by Participant 1.
“The guidelines change so frequently because there’s still just not a whole lot of research around, you know? What distance do we need to keep between my infusion and when we start trying? And how long can we try before I need to get reinfused?”
Most participants were aware of and wanted to maximize the known benefits of breastfeeding for themselves and their newborns. However, the data on DMTs and breastfeeding are limited, and Participant 5 expressed her long-term concerns.
“As far as we know, it’s safe. But we don’t know, 5, 10 years down the road what it’s known to do to children because there [are] not enough data. So I just didn’t feel comfortable enough being…a lab rat, seeing what it might do to a child 10 years down the road for that research.”
Other questions raised included the safety of pregnancy, inheritance of MS, safety of DMTs and medications to manage MS symptoms, and safety of a cesarean delivery versus a vaginal delivery.
Provider Counseling
Most participants relied heavily on guidance from their MS specialist, although some still felt uncertain, especially about DMT timing and lactation, even after their neurology appointments. Participant 8 felt that the counseling she received conflicted with conventional guidance that breastfeeding is beneficial for mothers and newborns.
“As clear as mud is how I left the conversations with [my MS specialist]…. It was her saying, ‘This is what my patients have done. This is what the research shows, which is not very much…’ Which one is more important to me? How do I set myself up for success? How do I set my baby up for success? And so I think there’s a lot of conflicting information.”
The unknown and unpredictability inherent in MS as a disease limits the ability of neurologists to provide prognostic information. For participants, like Participant 2, who seek straightforward answers, discussions of possible outcomes can leave them with lingering uncertainty even after their appointment.
“I know she doesn’t have most of those answers because there’s not [enough] research.… But that unknown,…well, you might relapse, but you might not. That’s a lot of the answers when you have MS. Well, you could be debilitated, but you could not. You could recover from an attack, or you could not.”
External Support/Communities
Some participants turned to external sources such as online support groups and communities for additional information. However, these sources sometimes exacerbated uncertainty due to conflicting advice. For instance, Participant 7 was unsure whether she could safely become pregnant because she saw others who were counseled not to become pregnant in an online support group for mothers with MS.
“Two women commented [that] their neurologist told them, ‘Don’t. That’s not fair to kids….’ It’s just such conflicting information that we’re being given.”
Forums and blogs can serve as additional resources and a source of validation when seeking others with similar experiences, but they can also perpetuate uncertainty. That was the case for Participant 10, who looked to online sources for advice on whether to continue breastfeeding after restarting her DMT.
“You find a lot of forums and blogs about people who search around [for] all the same questions and answers that you’re looking for, and there were just such conflicting messages out there…. Listening to the masses or to the scary stories on Reddit is probably not the way to make your decision.”
Dealing With Uncertainty
To cope with uncertainty, some participants made detailed plans, including organizing backup childcare, preparing breastmilk reserves, selecting a formula, and scheduling DMT infusions in advance. This strategy helped them gain a sense of control in the face of an unpredictable condition, as described by Participant 6.
“All the just-in-case [scenarios] because you don’t know what your body is gonna do.... It lives inside you, and it comes up whenever it feels like it. You know, if it wanted to break through the medicine, I’m sure it probably could.”
Discussion
To our knowledge, this is the first qualitative study focusing on the unique uncertainties people with MS face regarding pregnancy. We identified several types of uncertainty, including concerns about the future, symptom classification, and the availability of reliable information. These uncertainties were discussed in the context of negative impacts on mental health, including postpartum depression and anxiety, fear of relapse, and logistical concerns about scheduling appointments and infusions. Living with uncertainty is a daily experience for people with MS,20,21 and intolerance of uncertainty is a known driver of anxiety22 and depression.23 This study expands on our current understanding of the relationship between uncertainty and mental health in a contemporary cohort of people with MS navigating pregnancy. Given the increased risk of postpartum depression24,25 and other mood disorders26 in people with MS, improving mental health care is crucial.
Prior qualitative and survey studies, including those by Morante-Herrera15 et al and Steinberg16 et al, have also identified general uncertainty about MS progression, DMT safety, the risks of pregnancy, and the need for more robust provider counseling. Our study builds upon this work by detailing specific types of uncertainty—related to future expectations, physical symptoms, and gaps in information—and their impact on mental health. In particular, differentiating MS-related symptoms from pregnancy-related physical experiences emerged as a unique challenge in our cohort, which has been less emphasized in prior studies. In addition, we describe coping strategies used by these participants to mitigate uncertainty, including detailed planning around postpartum care, highlighting opportunities for provider interventions. These findings add contemporary insights, particularly among people with MS treated with monoclonal antibodies, to the evolving topic of pregnancy counseling in MS.
This study underscores how neurologic illness and the potential for debility of people with MS affect their perceived ability to care for their children; those who are considering growing their family have to navigate the potential impact of treatment gaps and/or treatment changes during this time. The increased risk of postpartum relapse in the 3 months after childbirth,9 which can lead to disability progression,27 is also a major source of anxiety. These concerns align with findings from a qualitative study of women with autoimmune rheumatic disease, where respondents expressed guilt about how their illness might impact their children and perceived trade-offs between disease management and pregnancy planning.28
Our participants often felt isolated and expressed a need for more community support. Social support can mitigate uncertainty21 and bolster mental health.26 This may be especially salient 3 to 6 months after birth, when emotional and physical support from partners and family may wane.29 Although supportive partners, family, friends, coworkers, and hired childcare were helpful, participants also relied on patient support groups like the Moms with MS Facebook group and the National Multiple Sclerosis Society Peer Connections program. However, the potential for misinformation in these groups30 highlights the importance of encouraging people with MS to verify information with their providers.
Given the negative impact of uncertainty on mental health and the finding that mood disorders can be overlooked in people with MS,22 providers should consider routinely screening for depression and anxiety using tools such as the Patient Health Questionnaire-2 and the Generalized Anxiety Disorder-7. Cognitive behavioral therapy and pharmacologic interventions are effective for treating symptoms of anxiety and depression in people with MS.31,32 Our interviewees reported relying on psychiatric medications, talk therapy, and marriage counseling to help manage their mental health.
In addition to directing more attention to mental health in pregnancy, we suggest that neurologists aim to decrease uncertainty where possible. Knowledge gaps among general neurologists providing pregnancy counseling have been reported, and increasing provider experience with people with MS could mitigate this.33 Our findings emphasize the need for accessible, reliable, and consistent information for people with MS during pregnancy and parenthood, consistent with prior studies.10-14 An intervention that consists of several brief psychological sessions34 that promote tolerance of uncertainty and acceptance of MS as a disease could be beneficial. This intervention has been shown to decrease psychological distress and improve quality of life for people with MS,35 but it has not been studied in the context of pregnancy.
Clear and timely communication with patients and a detailed plan for DMT timing during pregnancy and lactation are important. Participants valued clear recommendations from their neurologist and guidance on differentiating MS symptoms from normal pregnancy symptoms. Providing anticipatory guidance for seeking care and what to expect in labor and delivery is also likely to be helpful. Participants expressed feelings of guilt and uncertainty regarding the role of MS in peripartum challenges, including infertility and postpartum complications, highlighting the need for counseling on these topics. Although MS is associated with an increased risk of infection and preterm delivery, it has not been shown to increase the rate of adverse pregnancy outcomes, such as preeclampsia.36 People with MS have a higher risk of infertility, but live birth rates are comparable to those of people without MS.37 A recent publication addressed the lack of clear recommendations by dispelling common myths surrounding MS and pregnancy management.38
Coordinated care across the multidisciplinary team is essential. Consistent with prior qualitative studies of people with MS,11 some participants noted the need for self-advocacy and reported negative experiences with providers unfamiliar with their DMT or symptomatic treatments during pregnancy. Equipping patients with up-to-date information and involving them in shared
decision-making would enhance their ability to advocate for themselves across health care settings.
Participants described their strategies for dealing with uncertainty, including conducting their own research, planning postpartum infusions, and preparing for potential relapses. Providers can support their patients by helping them create individualized plans, which may mitigate uncertainty about the future.
Table 2 summarizes the main recommendations for providers caring for people with MS who are considering pregnancy or are currently pregnant.
Limitations of our study include a small sample size and limited diversity in race, socioeconomic status, and gender identity, all of which can impact pregnancy outcomes. For instance, Black and Hispanic women with MS have higher disability rates and fewer health care resources leading up to pregnancy, and they give birth to babies with lower birth weights and breastfeed for shorter durations compared to White women.39 In this cohort, all participants were White and were treated with high-efficacy DMTs (ie, natalizumab, ocrelizumab, ofatumumab). All participants identified as cisgender and received care from a single MS specialist with expertise in women’s health. As many participants noted, their experiences may not reflect those of all people with MS, particularly those who are economically disadvantaged or lack access to health care. An additional limitation is that symptom burden and disability information were not collected, rendering it difficult to ascertain the influence of these factors on interviewees’ pregnancy experiences. Future studies with diverse patient populations and detailed disability data are necessary to comprehensively address the needs of all people with MS.
Conclusions
People with MS experience multiple uncertainties in pregnancy regarding anticipation of the future, symptom classification, and information availability. Our study emphasizes the need to address information gaps via provider counseling and presents recommendations for providers caring for people with MS who are planning pregnancy or are currently pregnant to decrease patient uncertainty and improve their mental health.
