Women with rheumatic and musculoskeletal diseases (RMDs) may have a greater risk for adverse pregnancy and perinatal outcomes, such as preeclampsia, preterm birth, intrauterine growth restriction, and fetal loss.1 However, recent data show that with adequate planning and treatment, women with RMDs can have successful pregnancies, with many rheumatology medications showing compatibility during pregnancy and lactation.2
However, patients have reported that their rheumatologists rarely initiate discussions about pregnancy planning or prevention, further citing a lack of consistency among the information given by different providers.3 These patients expressed a desire for rheumatologists to play a greater role in discussing their sexual and reproductive health needs.4
To that effect, the main goal of the American College of Rheumatology (ACR) 2020 guideline for the management of reproductive health in rheumatology was intended to “provide substance and direction for discussion between clinicians and patients.”Due to the low level of available evidence in RMDs, the guidance includes recommendations and good practice statements on the use of safe and effective contraception, prepregnancy counseling, the use of compatible medications during pregnancy, and collaboration with obstetrics and gynecology (OB-GYN) when it comes to matters of reproductive health.2
Factors to Consider During Discussions With Patients
Prepregnancy & Pregnancy Planning
In 2021, Mitchell et al interviewed a focus group comprising rheumatologists and other advanced practice clinicians to determine strategies for providing comprehensive care for patients’ sexual and reproductive health. During the study, rheumatology providers indicated that the effectiveness of conversations surrounding contraception and medication safety before and during pregnancy was often undermined by limited data and knowledge gaps.5
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The first step is to realize that patients want to discuss their sexual and reproductive health with us. The best way to do this is to be open to these discussions, including asking patients about any sexual concerns or difficulties and if these types of conversations make them uncomfortable.
While many patients with RMDs can have successful pregnancies,2 others may be advised against becoming pregnant, and these discussions can be challenging for both patients and providers.
Lisa Christopher-Stine, MD, MPH, professor of medicine and neurology, director of the Johns Hopkins Myositis Center at the Johns Hopkins Division of Rheumatology, and co-chair of the Institutional Review Board-5, discussed the clinical scenarios in which pregnancy should be avoided among patients with RMDs and how clinicians can navigate these difficult conversations.
“Most rheumatologists recommend against pregnancy during phases of active disease because pregnancy outcomes may be worse during this time.6 In general, I recommend at least 3 months of quiescent disease activity prior to attempting conception. Most patients understand this and comply with it. It is very important to discuss the fact that, in most instances, women can have a successful pregnancy. It is the timing that is important for the best outcomes of both mother and baby.”
Brooke Mills, MD, RhMSUS, assistant professor of the Division of Rheumatic Diseases, Internal Medicine, at the University of Texas Southwestern Medical Center, also weighed in on the topic.
“Patients with high disease activity and active organ involvement, especially lupus nephritis, should be asked to defer pregnancy until their disease is better controlled. I also inform patients of the potential for chronic organ damage from active disease leading to persistent pregnancy safety concerns.7 I use this initial conversation to emphasize the importance of medication/appointment compliance, so we can do our best to prevent long-term organ damage and preserve the potential for future pregnancies.” She also added, “Patients with rheumatic diseases with extensive organ damage and/or pulmonary hypertension should be counseled against ever getting pregnant due to maternal safety concerns during pregnancy.”
Medication Usage
Results of the study by Mitchell et al showed that rheumatology providers feel they have limited knowledge and training regarding certain aspects of sexual and reproductive health, especially when it comes to teratogenic medication-related risks.5
However, discussions about initiating immunosuppressive medications among patients with RMDs of childbearing age are important, in order to highlight potential harms to reproductive health, Dr Christopher-Stine noted. Recently, many rheumatology medications have been supported for use during pregnancy. For example, patients with systemic lupus erythematosus (SLE) who receive treatment with hydroxychloroquine (HCQ) may have better pregnancy outcomes. In fact, the ACR strongly recommends that women with SLE continue to take HCQ during pregnancy, as there is low evidence of risk for adverse events for the mother and fetus.2
Dr Mills added, “Risks of potential medication toxicity vs risk for active disease need to be discussed on an individual basis. Patients should be informed of the association between adverse pregnancy outcomes and high disease activity state.6 Before initiation of therapies during pregnancy, clinicians can provide patients with a medication fact sheet from, for example, the MotherToBaby website,8 which has relevant data to make an informed decision about medication use during pregnancy.”
Collaboration Between Specialties
In a recent study by Chakravarty et al, patients with systemic inflammatory diseases, including those with ankylosing spondylitis and SLE, felt that their family planning and pregnancy concerns were not adequately addressed by their providers. In addition, patients reported that they received inconsistent advice from specialists managing different aspects of their care.3 In terms of sexual and reproductive health, patients with RMDs reported feeling like “intermediaries between their rheumatologists and obstetrician-gynecologists.”4
“In a perfect world,” Dr Mills noted, “rheumatologists and OB-GYNs would have immediate access to each other’s resources and lab notes, so patients’ concerns can be addressed quickly; however, this is not always the case.” Apart from documentation on electronic health records, previsit surveys, educational lectures, pamphlets, and online resources can all spread awareness and enhance collaboration between specialists, Dr Mills added.
Adding to these comments, Dr Christopher-Stine stated, “I also remind patients that there should be open lines of communication between all providers in their care. If I have specific recommendations, I strategize together with OB-GYN to achieve the best outcomes for the patient. Ultimately, this requires buy-in and comfort from both rheumatologist and OB-GYN.”
Chakravarty and colleagues also discussed the development of cross-speciality international guidelines by medical societies to help bridge communication gaps, as well as evidence-based data on the risks vs benefits of medication use and disease activity to act as resources for both patients and clinicians.3
How Can Rheumatologists Be More Involved in Patients’ Reproductive Health?
“The first step is to realize that patients want to discuss their sexual and reproductive health with us. The best way to do this is to be open to these discussions, including asking patients about any sexual concerns or difficulties and if these types of conversations make them uncomfortable. It is interesting to note that many patients at my clinical practice are open to having these discussions and are relieved that the topic was brought up,” Dr Christopher-Stine noted.
One of the perceived barriers that clinicians have noted is time constraints during in-office visits, which typically include educating patients about the management of their condition along with addressing other concerns, including reproductive health.5
Dr Mills said, “One potential solution for this would be the addition of a brief questionnaire for women of childbearing potential — to be completed prior to each visit — that focuses on sexual activity, contraception use, and future pregnancy intent. This type of intervention may help patients recognize that providers are interested in understanding their reproductive health concerns and prompts the need for further discussions, if indicated.”
In recent years, there seems to be a “push” to improve provider awareness and education in sexual and reproductive health. However, overall, sexual and reproductive health among patients with RMDs requires more research and data to help guide clinical providers in understanding the complexity of these topics, ensuring the comprehensive care of these individuals.
Editor’s Note: The interviews with Dr Christopher-Stine and Dr Mills were edited for length.
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