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

Abstract

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 dz = 0.75) and in pregnant patients regarding medication management (t(32) = 2.37, p = 0.0242, dz = 0.41). DSES for PC patients improved significantly post-PIDA (t(40) = -3.56, p = 0.001, dz = -0.56). CCPKnow improved significantly post-PIDA in PC (t(42) = 4.93, p < 0.0001, dz = -0.75) and pregnant patients (t(32) = 5.1, p < 0.0001, dz = -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.

Inadequate pregnancy‐specific knowledge among patients with inflammatory bowel disease: A multicenter survey in China

“…This information will assist patients in making informed decisions, stimulating discussion with clinicians, reducing voluntary childlessness, and enhancing maternal, fetal, and infant outcomes. 24,25 Thus, based on our survey of pregnancy knowledge, there was an urgent need to improve pregnancy education among IBD patients in China. In our study, the patients' previously limited knowledge, especially their primary concerns about medications, was significantly enhanced through education.…”

Pregnancy in Patients with Inflammatory Bowel Diseases—A Literature Review

“…In fact, it was noticed that female patients that have received specialized preconception, intrapartum and postpartum counseling had improved maternal and fetal outcomes [ 27 , 28 ], but few patients have access to specialized clinics. Therefore, in most cases, websites and information sheets such as (accessed on 31 January 2023) can help patients to make a correct decision together with their healthcare providers [ 29 , 30 , 31 ].…”

Letter: expanding the role for decision aids in IBD into pregnancy‐related topics

“…Pilot testing has been conducted, which has demonstrated the effectiveness of PIDA in improving decisional conflict and knowledge in patients of either pre-conception or pregnancy status. 10 In keeping with IPDAS, we are embarking on a multi-national clinical trial to facilitate beta testing to further validate the use of PIDA. Thereafter, we envision that PIDA will be implemented in routine clinical practice, as well as be potentially tailored for sub-populations, such as patient cohorts of different languages, educational levels and religious or cultural beliefs.…”