Abstract

BACKGROUND: Inflammatory bowel disease (IBD) most commonly affects women in their reproductive years. Many patients, lacking knowledge about IBD and reproduction, make uninformed decisions such as voluntary childlessness and medication cessation. Studies using the Crohn's and Colitis Pregnancy Knowledge (CCPKnow) tool found that nearly 50% of women with IBD have poor insight surrounding its impact on pregnancy. Education should be individualized to the patient’s knowledge base and include topics of most importance to the patient. We aimed to describe the priority rankings of topics selected by patients seeking preconception and pregnancy counselling. METHODS: As part of an ongoing prospective cohort study, intake forms were administered to all women with IBD seeking consultation at the Marie and Barry Lipman IBD Preconception and Pregnancy Planning (I-PrePP) Clinic between 2015–2018. The forms collected demographic and clinical data, as well as obstetrical history. Patients were asked to rank, in order of importance, 9 a priori preconception, pregnancy and post-partum topics they would like addressed by the IPrePP care team which includes an IBD physician and a high-risk OB. Topics were derived from the CCPKnow. Patients were excluded from analysis if 4 or more items were ranked as the top priority (#1), or if missing a numerical ranking. Primary outcome was the frequency that each topic(s) was ranked as #1 priority. Descriptive statistics summarize patient level data (mean [SD]). RESULTS: Ninety-five women with IBD (mean (SD) age; 32 (4.5) years) were seen in consultation at the monthly IPrePP Clinic and 65 (39 (60%) CD and 26 (40%) UC) intake forms were analyzed. Of the 65, 40 (62%) were seen preconception (63% Gravida 0) and 25 (38%) were pregnant (48% Gravida 1, Parity 0). Forty-three percent (28) were on biologics at the visit; infliximab (46%), adalimumab (21%), ustekinumab (4%), certolizumab (11%) and vedolizumab (18%). Thirteen (20%) patients were not on any IBD therapies and the remaining were on 6-mp (17%), 5-ASA (3%) and/or steroids (8%). Nineteen (29%) women had a history of surgery (84% bowel resections; 16% perianal surgery), 7 (11%) had Ileal pouch anal anastomosis (IPAA) or total proctocolectomy. Safety of medications was most commonly ranked as top priority (48%) followed by control of IBD activity and impact on pregnancy (31%), impact of IBD and surgery on fertility (20%), pregnancy outcomes for the baby (17%), mode of delivery (11%), breastfeeding (6%), inheritance risk (6%), nutrition (5%) and vaccinations (2%). Of the 31 patients who prioritized safety of medications, 5 were not on any therapy, 13 on non-biologics and 13 on biologics. Of the 18 not on biologics, 10 had a prior history and 2 had stopped due to pregnancy. Biologic therapy was recommended in 6 patients at the visit. Of the 13 patients who ranked fertility as priority; 5 were Gravida 0, 3 had a spontaneous abortion and 5 had at least 1 child. Six sought fertility counselling and 1 used assisted reproductive technology. CONCLUSION(S): Safety of IBD medications remains a priority topic for patients seeking preconception and pregnancy counselling. Improving knowledge on topics prioritized by patients will improve pregnancy outcomes.

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