In the U.S. today, approximately 45% of pregnancies are unintended or unplanned.1 Although this rate is considerably lower than in the past, women with rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) or inflammatory myopathies tend to have better pregnancy outcomes if their disease is well controlled when they conceive.
In addition, women taking certain medications to control their disease, such as methotrexate, mycophenolate or leflunomide, could put their fetus at risk if they have an unexpected pregnancy. In a 2011 study of 206 California women with SLE published in Arthritis Care & Research (AC&R), 59% had received no contraception counseling in the previous year, 22% reported they used contraception inconsistently and 53% solely relied on barrier methods to prevent pregnancy.2 Another survey published in 2016 revealed that 33% of women with SLE did not receive contraception counseling when they started a new medication, and those patients with the highest disease activity were the least likely to receive this counseling.3
Authors of a new paper in AC&R, “Family Planning Counseling for Women With Rheumatic Diseases,” not only highlight the present gaps in counseling for these patients, but also call for rheumatologists to take an active role in this counseling.4 Rheumatologists are uniquely qualified to manage a woman’s disease activity during her pregnancy and understand the risks of common medications, the authors say. Rheumatologists must overcome communication barriers about pregnancy and contraception, and in place of assumptions, ask patients open-ended questions to determine their reproductive goals and plan adequately for pregnancy.
There is work to be done: Only 56% of rheumatologists surveyed in a 2014 study said they routinely offered this counseling to women patients in their childbearing years, the authors note.5
“The consequences of unintended pregnancy can be very different [for] healthy women [than for] women with rheumatic diseases,” says Mehret Birru-Talabi, MD, PhD, assistant professor, Division of Rheumatology and Clinical Immunology at the University of Pittsburgh, and one of the paper’s coauthors. “A healthy woman who has an unintended pregnancy has really good chances of delivering a healthy baby. While many women with rheumatic diseases have successful pregnancies, there are a considerable number of women who experience adverse outcomes.”
When a pregnancy is unplanned and a patient’s disease is poorly controlled at conception, adverse outcomes could include intrauterine growth restriction, preeclampsia or even fetal loss, the authors say. To optimize outcomes, women with rheumatic diseases are advised to plan pregnancy when they’ve had quiescent disease for at least several months while on pregnancy-compatible medications, says Dr. Birru-Talabi.
However, some clinicians also make assumptions about the patient’s childbearing capacity or reproductive goals, she says.
“We might assume that our patients share our same priorities, and that’s just not the case. Some women may feel the urgency to conceive in the setting of disease activity or other life adversities for their own personal reasons. I think open-ended questions help,” she says. Patients may have thoughtful, purposeful explanations for why they wish to proceed with a pregnancy despite risks. “If we try to withhold judgment, but are clear about the potential risks, then we may be able to together come up with a good plan with our patients that takes their thoughts and opinions fully into account.”
Rheumatologists, gynecologists and primary care physicians (PCPs) may not always agree about family planning recommendations, she says. “If a patient has multiple providers who do not have a comfort level or adequate experience to manage family planning issues, the patient is at risk of having their reproductive needs unmet.”
Improved Counseling Needed
Clinicians, including rheumatologists, may provide “inadequate and inconsistent family planning counseling to women with rheumatic diseases,” the new paper’s authors write. Some rheumatologists may not consider family planning counseling part of their routine clinical responsibilities, or they may feel overburdened by an array of competing responsibilities and leave family planning discussions to PCPs or gynecologists. Providers in different specialties may be unfamiliar with existing recommendations on safe contraceptive and anti-rheumatic drug use by patients during pregnancy, including the British Society of Rheumatology’s recommendations, published in 2016.6 The paper also reviews the efficacy of available contraception methods to prevent unintended pregnancy, as well as special considerations for women with thromboembolism risk, such as those with active SLE.
“It might be a good idea for rheumatologists to have a basic sense of what contraceptive methods exist,” and keep a list of safer or preferred methods on hand to go over with patients, says Dr. Birru-Talabi. Rheumatologists might become more comfortable prescribing emergency contraception, which “is probably safe for most women, and these methods don’t contain estrogens.”
A woman’s rheumatologist may be more aware of the thrombosis risks she faces if she takes estrogen-containing contraception than her gynecologist or PCP, who are probably the ones prescribing it. So a rheumatologist may be best trained or informed to manage her family planning care, says Dr. Birru-Talabi. Thrombosis risk from progestin-only contraception methods, such as a short course of emergency contraception, is unclear, but may be preferable to an unintended pregnancy in these patients, she says.
De facto PCP?
Patients with RA or SLE may follow up regularly with their rheumatologist, but less frequently with their PCP or gynecologist, so their rheumatologist can become their de facto PCP, she says. In some cases, rheumatologists can work together with obstetrician/gynecologists to co-manage care. It’s a good first step where available, she says.
In the future, cross-disciplinary guidelines may help clarify various providers’ roles and responsibilities for both family planning and recommendations, says Dr. Birru-Talabi. The good news is that there are many contraception choices right now, and most are safe for women with rheumatic diseases.
“We might be a little more cautious about estrogen-containing contraceptives among with women with antiphospholipid antibody syndrome or SLE with antiphospholipid antibodies. However, the highest estrogen state possible is pregnancy, and this certainly exposes a woman to more estrogen than the pill, for example,” she says. Intrauterine devices (IUDs) don’t seem to increase pelvic inflammatory disease or sexually transmitted infection risk in women who use immunosuppressant medications, “so women shouldn’t fear contraception,” she says. “I think most women are willing to discuss the risks and benefits of any particular medication, including birth control.” Contraception methods that don’t contain estrogen include the Depo-Provera shot, IUDs, subdermal implants and the progestin-only pill.
High rates of unintended pregnancies highlight that a functional, intact framework for family planning for patients with rheumatic diseases is needed, she says. Rheumatologists should discuss patients’ reproductive goals at the time of diagnosis and present themselves as an informative resource for their patients—both women and men.
“We don’t have a good perception of the risks of various diseases or drugs on male reproduction. However, most drugs appear to be safe, and most children of fathers with rheumatic diseases tend to do well. Nonetheless, we need to follow up on these observations and assumptions with real studies and data so we can better educate male patients about risks.”
Susan Bernstein is a freelance medical journalist based in Atlanta.
References
- Finer LB, Zolna MR. Declines in unintended pregnancy in the United States: 2008–2011. New Eng J Med. 2016 Mar;374:843–852.
- Yazdany J, Trupin L, Kaiser R, et al. Contraceptive counseling and use among women with systemic lupus erythematosus: A gap in health care quality? Arthritis Care Res (Hoboken). 2011 Mar;63(3):358–365.
- Ferguson S, Trupin L, Yazdany J, et al. Who receives contraception counseling when starting new lupus medications? The potential roles of race, ethnicity, disease activity and quality of communication. Lupus. 2016 Jan;25(1):12–17.
- Birru Talabi M, Clowse ME, Schwarz EB, et al. Family planning counseling for women with rheumatic diseases. Arthritis Care Res (Hoboken). 2018 Feb;70(2):169–174.
- Chakravarty E, Clowse ME, Pushparajah DS, et al. Family planning and pregnancy issues for women with systemic inflammatory diseases: patient and physician perspectives. BMJ Open. 2014 Feb 5;4(2):e004081.
- Flint J, Panchal S, Hurrell A, et al. BSR and BHPR guideline on prescribing drugs in pregnancy and breastfeeding, Part I: Standard and biologic disease-modifying anti-rheumatic drugs and corticosteroids. Rheumatology (Oxford). 2016 Sep;55(9):1693–1697.