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

Bethesda, MD (Jan. 17, 2018) — 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.”

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.”

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.

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.

###

Inflammatory bowel disease (IBD) is a group of disorders, including Crohn’s disease and ulcerative colitis. These conditions can cause abdominal pain, diarrhea and weight loss. Symptoms can often be controlled by medication, but sometimes surgery is needed, as well. In the U.S., 1.6 million people have IBD. Of those, roughly half are women, and most of them will have the disease during their childbearing years.2,3

The American Gastroenterological Association is the trusted voice of the GI community. Founded in 1897, the AGA has grown to more than 16,000 members from around the globe who are involved in all aspects of the science, practice and advancement of gastroenterology. The AGA Institute administers the practice, research and educational programs of the organization. http://www.gastro.org.

The Crohn’s & Colitis Foundation is the largest non-profit, voluntary, health organization dedicated to finding cures for inflammatory bowel diseases (IBD). The Foundation’s mission is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults who are affected by these diseases. The Foundation works to fulfill its mission by funding research; providing educational resources for patients and their families, medical professionals, and the public; and furnishing supportive services for those afflicted with IBD. For more information visit http://www.crohnscolitisfoundation.org, call 888-694-8872, or email [email protected].

The Society for Maternal-Fetal Medicine (SMFM) is a non-profit, membership organization based in Washington, DC. With more than 3,500 physicians, scientists and women’s health professionals around the world, the Society supports the clinical practice of maternal-fetal medicine by providing education, promoting research and engaging in advocacy to optimize the health of high-risk pregnant women and their babies. SMFM hosts an annual scientific meeting in which new ideas and research related to high-risk pregnancies are unveiled and discussed. For more information, visit http://www.smfm.org.

The vision of Girls With Guts is to establish a national support network that assists women with inflammatory bowel disease (Crohn’s Disease & ulcerative colitis) and/or ostomies in their search for community and acceptance. From in-person events to virtual chats, Girls With Guts provides a variety of programming to bring patients, doctors, and thought leaders together and empower women with IBD through the building of sisterhood and self-esteem. The organization strives to give all women with IBD the strength to find their confidence and keep it, despite having IBD or an ostomy.

At UCB, everything we do starts with a simple question: “How will this make a difference to the lives of people living with severe diseases?” We have a passionate, long-term commitment to discovering and developing innovative medicines that transform the lives of people living with severe diseases. We do that by connecting with patients and their families around the world living with the physical and social burdens of severe disease. Those connections offer new perspectives, drive innovation, and offer the hope of a new generation of therapies that are helping to transform lives.

BabyCenter is the world’s number one digital parenting resource. Our content reaches more than 100 million people monthly through websites, mobile apps, online communities, email series, social programs, print publications, and public health initiatives. In the United States, 7 in 10 new and expectant moms online use BabyCenter.

We are committed to improving maternal health around the world, and our team works closely with nonprofits, NGOs, and governments to make motherhood safer for all women.

Wakefield Research is a leading, independent provider of quantitative, qualitative, and hybrid market research. Wakefield Research supports the world’s most prominent brands and agencies, including 50 of the Fortune 100, in 70 countries.

1. Wakefield Research (October 2018). AGA Phase 1 Survey. Unpublished raw data.

2. Kaplan, G.G. and S.C. Ng, Understanding and Preventing the Global Increase of Inflammatory Bowel Disease. Gastroenterology, 2017. 152(2): p. 313-321 e2.

3. Ng, S.C., et al., Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: a systematic review of population-based studies. The Lancet, 2018. 390(10114): p. 2769-2778.

4. Mahadevan et al., Inflammatory Bowel Disease (IBD) in Pregnancy Clinical Care Pathway – A Report from the American Gastroenterological Association IBD Parenthood Project Working Group. Gastroenterology, 2018.