AGA releases guide to care for women with IBD throughout family planning

The American Gastroenterological Association (AGA) announced "Inflammatory Bowel Disease (IBD) in Pregnancy Clinical Care Pathway—A Report from the American Gastroenterological Association IBD Parenthood Project Working Group" published online today ahead of print. The new pathway creates a standardized work flow among health care providers (HCPs) who treat women with IBD throughout all stages of family planning. AGA developed the pathway in partnership with the Crohn's & Colitis Foundation, the Society for Maternal-Fetal Medicine, and patient support network, Girls With Guts.

Caring for women of childbearing age with IBD requires complex decisions and coordination among multiple medical specialties. However, women report feeling the weight of this responsibility and often feel they receive inconsistent medical advice from HCPs. In addition, a recent survey by AGA found that more than 40 percent (n=108) of surveyed clinicians at obstetrician/gynecologist (OB/GYN) practices who treat this patient population feel the quality of information women with IBD receive about pregnancy, as it relates to their condition, is inadequate compared to patients with other immune-mediated disorders.1

"In the United States, 1.6 million people have inflammatory bowel disease and of those, roughly half are women—who will carry the diagnosis through their childbearing years," says Dr. Uma Mahadevan, AGA spokesperson, IBD Parenthood Project program chair and Professor of Medicine at the Colitis and Crohn's Disease Center, University of California, San Francisco.2,3 "With proper planning and care, women with inflammatory bowel disease can have healthy pregnancies and healthy babies; however, misperceptions and fears have driven many women with inflammatory bowel disease to delay pregnancy or be voluntarily childless. AGA convened the IBD Parenthood Project to create a singular vision for the care of these patients and to create evidence-based materials that will arm and empower patients to have open and ongoing conversations with their HCPs."

Care coordination team

Among the published recommendations, the new pathway suggests pregnant women with IBD coordinate their care with a maternal-fetal medicine (MFM) subspecialist, who can determine the type of monitoring needed and frequency of prenatal visits with an obstetric provider, and be followed by a gastroenterologist (GI) with a clear expertise in IBD.4 While some patients and providers do not have access to IBD experts and MFM subspecialists, particularly outside of urban centers, any GI, OB/GYN, or specialized physician assistant, nurse practitioner, or midwife can follow the care pathway to optimize outcomes in this population. For these women, the clinical care pathway recommends preconception planning should be a key component of their GI visits, even if they're unsure of their future plans. Similarly, an IBD diagnosis should be shared during an initial visit with their obstetric provider.

"We recommend a patient's gastroenterologist coordinate her inflammatory bowel disease care and see the patient regularly throughout her pregnancy in close collaboration with her maternal-fetal medicine subspecialist, who has expertise in high-risk pregnancies and will lead her pregnancy-related care in concert with the patient's delivery provider," says Dr. Christopher Robinson, Society for Maternal-Fetal Medicine spokesperson, IBD Parenthood Project working group member and maternal-fetal medicine physician, Roper St. Francis Healthcare and Summerville Medical Center. "Although not all patients will have access to specialty care, pregnant women with inflammatory bowel disease should also be seen regularly throughout the duration of their pregnancy by additional providers (obstetrician/gynecologist, nutritionist, psychologist, lactation specialist, etc.), as needed."

Adds Dr. Rajeev Jain, AGA spokesperson, IBD Parenthood Project program co-chair, partner, Texas Digestive Disease Consultants, "Understanding the impact of inflammatory bowel disease throughout all stages of pregnancy can help practitioners and patients develop a plan to achieve the best outcome and reduce complications. Family planning should be on the gastroenterologist and obstetric provider, utilizing tools and resources, such as a discussion guide, whenever they see an inflammatory bowel disease patient of childbearing age."

Medical management of IBD during pregnancy

One of the greatest known risks to pregnancy outcomes is an IBD flare, yet many women are unsure of whether medication is appropriate to take during pregnancy. In fact, 94 percent (n=436) of clinicians surveyed reported having patients who have stopped taking their IBD medication for fear it would negatively impact pregnancy.1

The clinical care pathway encourages women to work with their HCPs before they get pregnant, during pregnancy, and after birth to develop and implement a treatment plan to achieve and maintain remission. Maintenance of remission is associated with reduced flares, decreased disease activity and fewer postpartum flares, with a lower incidence of adverse pregnancy outcomes.4 Postpartum care of women and babies should also be discussed and determined across disciplines by the GI, obstetric provider, pediatrician and lactation specialist before birth.

Review of the clinical care pathway is encouraged for more specifics about fertility, genetics, treatment, delivery options and overall postpartum care.

Clinical care pathway publication

The clinical care pathway is available online ahead of print in Gastroenterology, the American Journal of Obstetrics & Gynecology, and Inflammatory Bowel Diseases (IBD Journal). The clinical care pathway will be published in the April issue of each journal.

As a trusted voice in the GI community, AGA is dedicated to improving the care of women of childbearing years living with IBD and is committed to redefining industry standards to further standardize and optimize health outcomes for mother, baby and provider. The IBD Parenthood Project is funded through support from UCB, a global biopharmaceutical company.