A NOVEL DECISION AID IMPROVES KNOWLEDGE AND QUALITY OF PREGNANCY-RELATED DECISION-MAKING IN IBD

摘要

Background Women with inflammatory bowel disease (IBD) with poor IBD-specific reproductive knowledge experience more voluntary childlessness. Poor knowledge is associated with fear of IBD medications in pregnancy; this must be addressed as active IBD at preconception (PC) correlates with worse intrapartum disease and poor fetal outcomes. The Pregnancy IBD Decision Aid (PIDA), developed by an international multidisciplinary team following International Patient Decision Aids Standards, is an interactive online tool that offers personalised decision support on fertility, pregnancy, and medications in IBD (Fig). Aims To assess PIDA’s impact on knowledge and quality of decision-making among PC and pregnant patients with IBD, and to evaluate its feasibility as a tool for patients and clinicians. Methods PC and pregnant women aged 18–45 with IBD, recruited in Canada and Australia, completed questionnaires pre and post PIDA to assess quality of decision-making (Decisional Conflict Scale, DCS; Self-Efficacy Score, SES) and IBD in pregnancy knowledge (Crohn’s and Colitis Pregnancy Knowledge Score, CCPKnow). DCS assesses if a decision is informed, aligned with personal values, and would be implemented. SES measures belief in one’s ability to make informed decisions. Patients and clinicians (gastroenterology, obstetrics, primary care) also completed feasibility surveys. Paired t-test assessed for differences pre and post PIDA. Results DCS and SES were completed by 74 patients (42 Crohn’s disease, 32 ulcerative colitis); 41 PC and 33 pregnant. DCS improved significantly post PIDA (effect size 0.44, p0.0001); this was observed in PC patients regarding pregnancy planning with IBD, and in pregnant patients regarding peripartum IBD medication management. SES of PC but not pregnant patients improved significantly post PIDA (effect size 0.32 vs 0.24, p=0.0001 vs 0.0525). In both cohorts, CCPKnow improved significantly post PIDA (n=76, effect size 0.66, p0.0001).Patients (n=73) assessed PIDA feasibility. Mean scores for length (3.05±0.44), readability (3.09±0.5), and content amount (2.91±0.81) were perceived as appropriate (1=limited, 5=excessive). Perceived usefulness of PIDA was high among all patients (4.09±0.93; 5=most useful). Clinicians (n=14) believed PIDA had appropriate length, readability, and content amount, and deemed PIDA useful to patients (4.6±0.8) and themselves (4.8±0.8) for clinical practice. Conclusions PIDA improved knowledge and quality of decision-making in PC and pregnant patients with IBD. Patients developed a strengthened belief in their ability to make informed, effective decisions, and both patients and clinicians found PIDA feasible. PIDA is an accessible tool that can empower women with IBD to make evidence-based decisions about pregnancy and may ultimately reduce voluntary childlessness. Open in new tab Download slide Sample page from the PIDA tool. Open in new tab Download slide Sample page from the PIDA tool.