Publication
Research Article
International Journal of MS Care
From Telespecialists, LLC, Raleigh, NC (KV); and the School of Medicine (VC) and Department of Neurology (SS), Duke University, Durham, NC. Correspondence: Suma Shah, MD, 122 Baker House, Duke Neurology, Durham, NC, USA 27710; email: suma.shah@duke.edu
Background: Multiple sclerosis (MS) is more prevalent in women and is frequently diagnosed during their childbearing years. Prior inquiry into patient knowledge regarding family planning has revealed that patients feel inadequately informed about topics surrounding pregnancy.
Methods: We designed and implemented a 13-question survey to assess patient comprehension surrounding pregnancy and treatment options at the Duke Comprehensive MS Center.
Results: Forty-four surveys were returned, with responses from 1 survey not included in the analysis due to most of the questions being left unanswered. The average patient age was 44 years. Thirteen of the 43 participants believed that their risk of relapse would increase during pregnancy, and 4 participants believed that their risk of relapse did not increase after pregnancy. Two patients reported that they had been told they could not have children due to their diagnosis of MS. Twelve of 37 participants reported that they did not have as many children as they would like.
Conclusions: The results of this survey highlight persistent gaps in knowledge regarding the ability to have children, risk of relapse throughout pregnancy and the postpartum period, and treatment options for women of childbearing age with MS. It was also noted that of the 11 participants who indicated that they wanted to have more children in the future, 4 were on disease-modifying therapies that are recommended to be discontinued once pregnant and 1 was on a therapy that is contraindicated in pregnancy. Addressing this gap would require up-to-date and evidence-based discussions about pregnancy in MS beginning at the initial visit and at each subsequent visit to allow individualization of the treatment plan.
Multiple sclerosis (MS) is more prevalent in women, with a 3:1 female to male sex ratio,1 and is frequently diagnosed during the childbearing years. Historically, citing the unpredictable and disabling nature of the disease, women were advised to avoid becoming pregnant. However, in the past 3 decades, a movement has been underway to better understand the disease in the setting of pregnancy and educate our patients on these updated findings and recommendations.2 Survey responses from several studies have shown that people with MS report feeling inadequately informed about treatment options during pregnancy and that they did not have easy access to reliable information. In a survey of people with MS in Switzerland, less than half reported that the topic of pregnancy was raised by their neurologist and less than one-fifth reported it was addressed at every visit.3 Results from another multicenter survey of 332 people with MS showed that one-third reported that MS significantly affected their plans for having children.4 Without adequate discussion between neurologists and people with MS, these decisions cannot be made effectively. Results from a prior survey showed that only 39% of participants (n = 311) were counseled by their neurologist on the importance of planning pregnancy,5 and results from another survey showed that 42% of female participants (n = 488) did not know whether any disease-modifying therapies (DMTs) could affect the fetus.6 Recommendations regarding the safety of DMTs during pregnancy and breastfeeding continue to be updated as new information is collected,7 and keeping patients updated on their options is important, but planning is needed to provide optimal and safe care to people with MS wanting to become pregnant, as available DMTs have varying degrees of safety during pregnancy, with some requiring more detailed planning regarding medication administration and attempts to conceive.
We designed and implemented a survey at the Duke Comprehensive MS Center to assess patient comprehension surrounding pregnancy and treatment options.
Figure. Pregnancy and Multiple Sclerosis Survey Distributed at the Duke Multiple Sclerosis Clinic
A 13-question survey was created to assess patient knowledge regarding pregnancy in MS and determine whether these topics were addressed by their neurologist in clinic (Figure). This survey was distributed to female patients of all ages presenting for evaluation in the Duke neuroimmunology clinic. Study data were collected and managed using Research Electronic Data Capture (REDCap) tools hosted by Duke University Health System. REDCap is a secure, web-based software platform designed to support data capture for research studies, providing an intuitive interface for validated data capture; audit trails for tracking data manipulation and export procedures; automated export procedures for seamless data downloads to common statistical packages; and procedures for data integration and interoperability with external sources.8,9 This study was approved by the Duke University Health System Institutional Review Board (Pro00113777).
Table. Survey Question Response Rate
Forty-four surveys were returned, with responses from 1 survey not included in the analysis due to most of the questions being left unanswered (Table). The average patient age was 44 years. Patients were on a variety of DMTs, including natalizumab (n = 8), ocrelizumab (n = 8), dimethyl fumarate (n = 6), diroximel fumarate (n = 3), fingolimod (n = 3), teriflunomide (n = 2), interferon-beta 1a (n = 2), peginterferon beta 1a (n = 1), rituximab (n = 1), and cladribine (n = 1); 8 respondents were not on a DMT and 2 respondents did not provide an answer.
Survey questions 3 and 4 evaluated patient knowledge in relation to risk of relapse during pregnancy and the postpartum period. Of the 43 respondents to these 2 questions, 13 (30%) believed that their risk of relapse would increase during pregnancy and 4 (9.3%) believed that their risk of relapse did not increase after pregnancy. Two reported that they had been told they could not have children due to their MS diagnosis.
Of the 37 participants who answered question 5b, “Do you have as many children as you would have liked?” 12 (32.4%) answered no. These women were on the following DMTs: fingolimod (n = 1), interferon-beta 1a (n = 1), dimethyl fumarate (n = 2), diroximel fumarate (n = 2), ocrelizumab (n = 2), natalizumab (n = 1), and none (n = 2); 1 respondent did not provide an answer.
Question 13 of the survey was an open response that allowed participants to describe what they would have liked to know about the relationship between pregnancy and MS or their personal experience with pregnancy and MS. Participant 17 stated, “We want to start a family, and I don’t know what to expect and when or if to stop medications.” Participant 23 stated, “I would like to know information about discontinuing treatment in preparation for pregnancy and age and pregnancy with MS considerations.” Participant 24 stated, “I had a relapse during pregnancy. I would have liked to have known more about women who had relapses during pregnancy. Additionally, after pregnancy, it took time to have a disease-modifying medication that worked. I did not think it would have been such a challenge, so maybe more information about how some people struggle with medications [in the] postpartum [period].” Participant 15 stated, “More pertinent to my family size were the implications that MS had on my marriage: my partner’s resentment toward the limitations my disease put on me. My experience has been that while people can be somewhat sympathetic, it is very difficult for them to understand why the person with MS has difficulties.” Participant 34 stated, “I’ve never requested counseling about this, but my main concern would be a relapse after delivery. Also, how it will impact your daily life. For example, how would MS fatigue affect the level of care given? Would the stress of parenting increase my risk of an MS flare? Would lack of sleep increase my risk of flare?” Participant 43 stated, “All I know is that if I want to have more kids, I would have to change my MS medication, I think.”
MS is the most common central nervous system demyelinating disease and frequently affects women of childbearing age. To provide comprehensive care, it is imperative to address issues about family planning. Results from this survey highlighted that even patients at a large subspeciality clinic are underinformed about pregnancy and MS, with gaps in knowledge regarding their ability to have children, risk of relapse throughout the pregnancy/postpartum period, and treatment options. It was also noted that of the 11 participants who wanted to have more children in the future, 4 were on DMTs that are recommended to be discontinued once pregnant and 1 was on a therapy that is contraindicated in pregnancy. Participant 43 stated she thought she would need to switch DMT to become pregnant; however, she was on natalizumab, and current evidence supports the use of this medication during pregnancy, with a thorough risk-benefit discussion with the medical team.10 If providers and patients were to have up-to-date and evidence-based discussions about pregnancy in MS beginning at the initial visit and at each subsequent visit, this would allow for the most appropriate DMT to be chosen early and create adequate time to create the best treatment plan to control MS while supporting a safe pregnancy.
Some participant responses to question 13 also emphasized the psychological impact of MS on patients and their families. A common theme was the uncertainty surrounding pregnancy and the postpartum period. As this has been noted to be a predictor for depression in MS,11 screening for mood disorders and connecting patients with mental health resources are extremely important.
There are several ways these educational and screening needs could be met, but 2 interventions occurred to us. A patient-centered, easy-to-navigate website with accurate information about pregnancy and MS would be an ideal intervention to help improve education. Another effective intervention could be to place informational materials in all clinic rooms that would remind patients and providers to address questions about pregnancy planning.
Our survey results demonstrated the persistence of patient knowledge gaps regarding pregnancy and MS even at a large subspecialty clinic. Although there have been advances in the scientific understanding of the impacts of pregnancy on MS disease course, patient understanding has not kept pace. We highlight the need for enhanced education and communication among patients and their neurologists to address these gaps and provide patient-centered, comprehensive MS care. In our current practice paradigm of prescribing high-efficacy and high-risk medications in a rapidly changing DMT landscape, it has become increasingly important to ensure that our patients are provided the best understanding of their options and expected outcomes.
Financial Disclosures: Suma Shah, MD, has received honoraria from Novartis and Sanofi. Kristen Veal, MD; and Vivian Chen, BS, report no conflicts of interest.
Prior Presentation: This manuscript was previously presented as a poster at the Consortium of Multiple Sclerosis Centers Annual Meeting; May 31 to June 3, 2023; Denver, Colorado.
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A Subspecialty for Half the World’s Population: Women’s Neurology
