Abstract
Background
A lack of IBD-specific reproductive knowledge has been associated with increased ‘voluntary childlessness’.Furthermore, a lack of patient and clinician knowledge may contribute to inappropriate medication changes during or after pregnancy that may lead to a flare of disease. Evidence exists for the benefit of decision aids to support decision-making in pregnancy in general, as well as in multiple other chronic disease; however, such a resource for pregnancy in IBD has not been identified.
Methods
Using International Patient Decision Aids Standards, we have commenced design of our Pregnancy in IBD Decision Aid (PIDA). A steering committee consisting of Canadian and Australian Healthcare professionals with an interest in IBD management in pregnancy, in addition to a patient representative was established. Initial patient and clinician focus groups were conducted. Themes prospectively chosen for discussion included inheritance, fertility, nutrition, medications, mode of delivery, breastfeeding, infant infections and vaccinations. We designed an electronic PIDA draft that incorporates individualised information (for example, type of IBD, pre-conception or pregnant, surgical history and current medications) in personalised decision-making. Further patient focus groups and interviews were conducted to obtain user opinion of the PIDA draft.
Results
In July 2017, patient and clinician focus groups were conducted at a Canadian site. Patient concerns regarding pregnancy included the impact of disease, previous surgical history on fertility, preterm delivery; the potential impact of current and past drug therapies on the fetus/ infant; and the negative impact of active disease on both maternal and fetal/infant health. Clinician concerns included the absence of pre-conception counselling and potential for lack of patient understanding about the impact of disease activity and IBD medication use in pregnancy. Patient feedback (n = 15) obtained through interviews at two Canadian and one Australian site regarding the current electronic PIDA draft was predominantly positive, with comments pertaining to the adequacy of content coverage, personalisation, readability and unbiased information presentation. Suggestions were made for inclusion of further content such as the impact of IBD on sexual function, expected laboratory changes and the timing of recommencement of medications post-partum.
Conclusion
The completion of pre and post-PIDA design focus groups and interviews affirmed the role for PIDA. Main decisions that were considered necessary to address included ideal timing of conception pending disease activity, management of medications and delivery methods. Ongoing user feedback is being obtained at Australian and Canadian sites currently.
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