A Novel Decision Aid Improves Quality of Reproductive Decision-Making and Pregnancy Knowledge for Women with Inflammatory Bowel Disease

Background Women with inflammatory bowel disease (IBD) with poor IBD-specific reproductive knowledge experience more childlessness and fear of IBD medications in pregnancy. The Pregnancy in IBD Decision Aid (PIDA), developed by an international multidisciplinary team, offers personalized online decision support regarding pregnancy in IBD. Aims Assess the impact of PIDA on quality of reproductive decision-making and pregnancy-related knowledge among preconception (PC) and pregnant patients with IBD, and evaluate acceptability to patients and clinicians. Methods PC and pregnant patients with IBD aged 18–45 completed questionnaires pre- and post-PIDA to assess quality of decision-making (Decisional Conflict Scale (DCS); Decision Self-Efficacy Scale (DSES) and IBD-in-pregnancy knowledge (Crohn's and Colitis Pregnancy Knowledge Score (CCPKnow)). Paired t test assessed for differences pre- and post-PIDA. Patients and clinicians completed acceptability surveys. Results DCS and DSES were completed by 74 patients (42 Crohn’s disease, 32 ulcerative colitis); 41 PC and 33 pregnant. DCS improved significantly post-PIDA in PC patients regarding pregnancy planning ( t (40) = 4.83, p < 0.0001, Cohen’s d z = 0.75) and in pregnant patients regarding medication management ( t (32) = 2.37, p = 0.0242, d z = 0.41). DSES for PC patients improved significantly post-PIDA ( t (40) = -3.56, p = 0.001, d z = -0.56). CCPKnow improved significantly post-PIDA in PC ( t (42) = 4.93, p < 0.0001, d z = -0.75) and pregnant patients ( t (32) = 5.1, p < 0.0001, d z = -0.89). PIDA was deemed optimal for length, readability, and content amount and considered highly useful by patients ( n = 73) and clinicians ( n = 14). Conclusions Patients using PIDA developed an improved quality of reproductive decision-making and IBD-in-pregnancy knowledge. PIDA is an accessible tool that can empower women with IBD to make values-congruent, evidence-based decisions regarding pregnancy and may reduce voluntary childlessness.