The American Gastroenterological Association (AGA) has introduced a new online resource aimed at offering inflammatory bowel disease (IBD) patients and their healthcare providers guidance and reassurance when it comes to family planning.
Hoping to address misperceptions and concerns throughout all stages of maternity planning, the IBD Parenthood Project was designed by gastroenterologists and maternal-fetal medicine subspecialists, along with patients.
The project’s website provides scientific facts about IBD and pregnancy as well as answers to frequently asked questions. It also offers an easy-to-use downloadable patient toolkit. For those considering pregnancy, the resource includes visual guides, a fact sheet, specific questions to ask healthcare providers, an outline of the kinds of medical experts patients could encounter, a postnatal care guide and provider locator tools.
A 2018 survey concerning IBD and family planning, conducted by AGA along with digital parenting resource BabyCenter, found that female IBD patients are in need of additional and improved information about disease management.
It included 286 female IBD patients in the U.S. who either were trying to conceive, were pregnant, or had given birth in the past 12 months. Findings revealed that 65% disagreed that IBD medicines were safe to use during pregnancy, or were unsure. And 57% worried about medication harming their infant, yet more than half rarely or never discussed concerns with their obstetrician during preconception planning.
Understanding the effects of IBD on pregnancy can help medical professionals and patients create plans to minimize risks of complications, particularly an IBD flare, a return of symptoms following remission. In fact, according to the AGA, uninterrupted treatment can actually lead to a healthier pregnancy.
“The number of women with IBD who are voluntarily childless is startling and worrisome,” Sheila E. Crowe, MD, chairwoman of the AGA, said in a press release. “To see that these women are three times more likely than that of the general population to choose not to have a child and to know that many of the reasons for their decisions are rooted in fear, led us to take action.”
This initiative dovetails with the recent release of an AGA guide for healthcare providers who treat women with IBD through all stages of family planning. The clinical care pathway results from an IBD Parenthood Project Working Group convened last year.
Recommendations in the guide include coordinating care through a maternal-fetal medicine specialist, a specially trained obstetrician. If there’s no access to such specialists or IBD experts, any healthcare professional can follow the guidelines, according to the AGA.
“The new clinical care pathway will give health care providers explicit direction for the treatment and management of women living with this disease,” said Uma Mahadevan, MD, AGA spokesperson and project chairwoman. “Partnered with the new patient resources available through our program website, we are confident that these pieces will support both patients and [healthcare providers] to have open and ongoing dialogue early to promote ideal health for both mom and baby.”
The patient-directed, AGA-led effort is supported by the Society for Maternal-Fetal Medicine, the Crohn’s & Colitis Foundation, and Girls With Guts patient support network. It’s funded by UCB, a global pharmaceutical company.