Planning to conceive within a year is associated with better pregnancy-specific disease-related patient knowledge and better medication adherence in women of childbearing age with inflammatory bowel disease

BACKGROUND: Adherence to inflammatory bowel disease (IBD) medication is crucial to maintain remission, especially during pregnancy. OBJECTIVE: To examine the influence of family planning and pregnancy-related patient knowledge regarding IBD and pregnancy on adherence. DESIGN: Cross-sectional survey study METHODS: We surveyed female patients with IBD aged 18–35 years, who at recruitment to the UK IBD BioResource had not had children. We elicited disease and treatment history, demographics and family planning status via an online questionnaire. Patient knowledge as assessed by the validated Crohn’s and Colitis Pregnancy Knowledge Score (CCPKnow) and adherence by visual analogue scale (VAS). RESULTS: In 326 responders (13.8% response rate), good adherence (VAS ⩾ 80) was found in only 38.35%. Disease- and treatment-related factors were not significantly associated with good adherence, except for methotrexate (70.0% adherent of 10 exposed patients versus 37.2% non-exposed; p = 0.036). Patients planning pregnancy for the next year were more often adherent (59.0% versus 35.5%; p = 0.019) and knowledgeable (median CCPKnow 8 versus 7; p = 0.035) compared to those in other family planning categories. Pregnancy-related patient knowledge was significantly associated with adherence (Pearson correlation 0.141; p = 0.015). Adherent patients had significantly higher CCPKnow scores than non-adherent patients (median 8 versus 6; p = 0.009). On binary regression analysis, only planning to conceive within 12 months was independently associated with better adherence (p = 0.016), but not methotrexate exposure (p = 0.076) and CCPKnow (p = 0.056). CONCLUSIONS: In a cohort of women of childbearing age with IBD overall medication, adherence was low. Planning to conceive within the next year was associated with better adherence and greater patient knowledge.