Exploring Reproductive Health Decision Experiences and Preferences of Women With Pediatric-Onset Inflammatory Bowel Diseases

BACKGROUND: Women with inflammatory bowel diseases (IBDs), such as Crohn’s disease or ulcerative colitis, face several disease-specific concerns related to their reproductive health decisions. This study explored the reproductive health decision-making experiences and preferences of women with IBD to discover ways to improve this aspect of comprehensive care. METHODS: We recruited women ages 18–44 years with IBD to participate in individual, semistructured interviews exploring their experiences and attitudes toward parenthood, pregnancy, contraception, and family planning care. Two independent coders performed analysis using an inductive and deductive coding approach and identified key themes. RESULTS: Twenty-one women with IBD participated in interviews (average age 24.7 ± 5.9 years, range 18–43 years; average age of diagnosis 14.1 ± 2.0 years). We identified 4 key themes: (1) Nulliparous women who do not currently desire pregnancy appear to lack reproductive health knowledge; (2) Women with IBD lack clarity regarding the role IBD plays in contraceptive choice; (3) Related to pregnancy, women are concerned about the heredity of IBD, antepartum disease activity, and the safety of their current medications; (4) Women with IBD typically default to their reproductive health provider for reproductive health care and counseling, but they expect their gastroenterologist to initiate relevant reproductive health discussions with them and to provide information in the context of their disease. CONCLUSIONS: Women have concerns about the effects of IBD on pregnancy, parenthood, and contraceptive choice; however, many have had limited or no discussion with their gastroenterologist about the topic.