Rheumatic Disease, Pregnancy, and Family Planning

Rheumatic diseases may have profound effects on women of childbearing age, the consequences of which extend to issues of family planning, fertility and conception, and health during pregnancy and the postpartum period, and even the decision to become or not become pregnant and how best to achieve those goals. 

Systemic lupus erythematosus, Sjögren's syndrome, and other rheumatic conditions may increase the risk of pregnancy complications. For women with these conditions, pregnancy itself and the physiological and hormonal changes that occur during pregnancy can accelerate disease activity and symptoms. Some women with rheumatic diseases may experience high-risk pregnancies and complications such as preeclampsia, fetal loss, and others. Further complicating the picture for pregnant women are the toxicities and side effects of some of the medications used to treat their underlying rheumatic condition. Several of these medications may have consequences with regard to fertility and the ability to safely conceive and carry a child to full-term birth, as first line treatments such as methotrexate carry teratogenic risk.

These aspects of family planning and pregnancy for women with rheumatic conditions are the focus of research for Mehret Birru Talabi, MD, PhD, one of the newest faculty members in the UPMC Division of Rheumatology and Clinical Immunology. "My research in the area of family planning and pregnancy for women with rheumatic disease focuses on the creation of a family planning framework in rheumatology that can guide the care and treatment of these patients," says Dr. Birru Talabi.

The Need for a Cohesive Care Framework

The current lack of a good framework for these patients is the product of many historical factors. In the past, some of these patients simply did not live long enough for pregnancy to be an option. The medications and treatments that are now in use and have greatly improved the health, quality of life, and lifespan for many patients did not exist. In prior decades, the prevailing approach was to simply advise patients, for their own health, to never become pregnant.

Today, because of the advances in treating many autoimmune diseases, the landscape is much more complex for these patients, and part of the reason Dr. Birru Talabi is advocating for a more coherent and coordinated approach, not only to patient care, but to education and counseling, and the training that rheumatologists receive in relation to family planning discussions. "We need to develop a framework that clarifies what the roles and responsibilities of rheumatologists are in relation to family planning. Many patients will have successful pregnancies, and we must communicate that positive news. We also need to develop ways to educate patients about the risks and possible complications of pregnancy--short- and long-term. Understanding what pharmacological agents are safe to give patients who do want to become pregnant is critical. So, too, is determining what medications are safe to use to keep the disease controlled during pregnancy. While most contraceptive methods are safe to use among women with rheumatic diseases, estrogen-containing methods may exacerbate disease activity among certain patients with antiphospholipid antibody syndrome and/or systemic lupus erythematosus. It's incumbent upon us to know how to prescribe safe contraception to women with these diseases, or to communicate with the patient's providers who are doing the prescribing, especially if we note that a patient is on a contraceptive method that could worsen her disease activity."

Patient Education Is Critical

Dr. Birru Talabi insists that rheumatologists must take an active approach to patient education as many patients may lack knowledge about aspects of their disease in relation to pregnancy and family planning. "We cannot assume that our patients really understand that if they are on a potentially teratogenic medication they need to be on contraception, or if they don't want to be on contraception perhaps we need to rethink what medications they are taking. We also cannot assume that a patient's other providers are guiding them through their family planning decisions. Some providers may not be comfortable giving counseling because of the complex nature of these patients. Many primary care providers or gynecologists simply are not trained in rheumatology. They are rightly concerned about harming the patient, so some may expect the rheumatologist to fully manage these aspects of the patient's care, even when we as rheumatologists feel that some of these issues may best handled by primary care and obstetrics-gynecology. Some patients are unclear about which provider is responsible for managing their family planning care and counseling, and these patients may be especially vulnerable to not receiving the reproductive health care that they need."

Education and planning make for better outcomes for those individuals who decide to pursue a pregnancy. While the current literature is limited, it suggests that women with autoimmune diseases who plan their pregnancies tend to have better outcomes. They have better outcomes from a pregnancy perspective and a fetal perspective. "Almost 50 percent of all pregnancies in this country are unplanned. Among our patients, we want to avoid a surprise pregnancy, if possible, so we first can make sure their diseases are well-controlled and they're on safe medications. So, we have to educate patients about the importance of pregnancy planning, why and how it is relevant, not only to their disease but also to their health and that of their baby. If patients can work with their rheumatologist and other providers to get their disease quiescent, and stable on safe medications for several months prior to pregnancy, we believe that their outcomes are going to be better than if their disease is active and they are using potentially teratogenic drugs. Unless explicitly counseled, a patient may not know that pregnancy planning may be important to help them to achieve the reproductive outcomes that they want," explains Dr. Birru Talabi.

Filling in the Gaps in Knowledge: Patients and Providers

In order to devise ways to best counsel women with autoimmune diseases about their reproductive health, one has to first understand what the patient understands. This is one aspect of Dr. Birru Talabi's current research. She is trying to ascertain from a cohort of 150 current patients with autoimmune conditions what knowledge they have about family planning issues surrounding their condition. This research seeks to understand their level of knowledge about how their disease may impact fertility, whether or not there is a genetic predisposition to pass along their condition to any children they may have, what they should do if they become pregnant, what they understand about fertility and preconception planning, and other aspects.

Dr. Birru Talabi also is interviewing rheumatologists across the United States about their attitudes and behaviors regarding family planning to tease out what barriers may exist to these patient conversations and what gaps exist in their knowledge base. "I'm interested in under.standing from my fellow rheumatologists how they are conducting or providing advice for family planning. What content areas are included in those conversations? What do providers want their patients to know, and what are they concerned about when it comes to caring for these women? I want to understand where they are getting the information they use in these conversations, so we can figure out what resources rheumatologists find are most helpful. Or, are there resources they wish they had? Again, where I am right now is trying to understand what it will take to build a framework for the care of these patients in relation to their family planning goals.We know it's important, we know we have to do it, but how and what is needed to construct this framework is the question I'm trying to answer."

References and Further Reading

1.Birru Talabi M, Clowse MEB, Schwarz EB, Callegari LS, Moreland L, Borrero S. Family Planning Counseling for Women With Rheumatic Diseases. Arthritis Care Res. 2017 April 24. Epub ahead of print.

2. Hickman, RJ. Rheumatic Disease Does Not Preclude Pregnancy. The Rheumatologist. November 9, 2017.