Introduction: Inflammatory Bowel Disease (IBD) affects many women of childbearing age, and rates of voluntary childlessness (VC) exceed those of the general population by far. The factors surrounding VC remain incompletely understood.
Methods: Female members of the patient organisation Crohn's and Colitis UK aged 18-45 years were invited to complete an online questionnaire collecting data on demographics, disease characteristics, Crohn's and Colitis pregnancy-specific disease-related knowledge (CCPKnow), and childlessness status.
Results: A total of 1324 women (mean age 33 years) completed the survey: 776 (59%) were diagnosed with Crohn's disease (CD), 496 (38%) with ulcerative colitis (UC) and 4% with inflammatory bowel disease-unclassified (IBD-U); 40% had children (14% pre-diagnosis (I); 26% post-diagnosis (II)), 36% planned to have children at some stage (III), 7% reported fertility problems (IV), and 17% were classified as voluntarily childless (VC). VC was associated with poorer CCPKnow scores [5.98 vs. 7.47 in (III); p < 0.001], older age [35 years old vs. 28 years old in (II); p < 0.001], unemployment (9.7% VC; p < 0.001), being single (34.5% VC; p < 0.001) not seeking medical advice (p < 0.001), and diagnosis of CD (19.3% vs. 13.9% UC; p = 0.015). Women with VC had more hospital admissions [mean 2.85 vs. 2.17 (III); p = 0.03] and surgical interventions [mean 1.27 vs. 0.65 (III); p < 0.001]
Conclusion: The aetiology of VC in women with IBD is multifactorial. Women's choice regarding children appears related to disease burden. VC is also associated with poor knowledge (CCPKnow), and women may stay childless unnecessarily. Patient education programmes could help to reduce the rate of VC in women with IBD, through correcting misconceptions and alleviating patient concerns.
Keywords: Inflammatory bowel disease; fertility; pregnancy; voluntary childlessness.
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