Shared decision making in pregnancy in inflammatory bowel disease: design of a patient orientated decision aid

Astrid-Jane Williams,Mary A De Vera,Daniel C Sadowski,Levinus A Dieleman,Eytan Wine,Kathleen Ismond,Vivian Huang,Susan Connor,Neda Karimi,Flora Fang-Hwa,Katie O’Connor,Dawn Kingston,Tawnya Hansen,Radha Chari,Rshmi Khurana,Yvette Leung

doi:10.1186/s12876-021-01853-y

Abstract

BackgroundResearch has indicated a lack of disease-specific reproductive knowledge among patients with Inflammatory Bowel Disease (IBD) and this has been associated with increased “voluntary childlessness”. Furthermore, a lack of knowledge may contribute to inappropriate medication changes during or after pregnancy. Decision aids have been shown to support decision making in pregnancy as well as in multiple other chronic diseases. A published decision aid for pregnancy in IBD has not been identified, despite the benefit of pre-conception counselling and patient desire for a decision support tool. This study aimed to develop and test the feasibility of a decision aid encompassing reproductive decisions in the setting of IBD.MethodsThe International Patient Decision Aid Standards were implemented in the development of the Pregnancy in IBD Decision Aid (PIDA). A multi-disciplinary steering committee was formed. Patient and clinician focus groups were conducted to explore themes of importance in the reproductive decision-making processes in IBD. A PIDA prototype was designed; patient interviews were conducted to obtain further insight into patient perspectives and to test the prototype for feasibility.ResultsIssues considered of importance to patients and clinicians encountering decisions regarding pregnancy in the setting of IBD included fertility, conception timing, inheritance, medications, infant health, impact of surgery, contraception, nutrition and breastfeeding. Emphasis was placed on the provision of preconception counselling early in the disease course. Decisions relating to conception and medications were chosen as the current focus of PIDA, however content inclusion was broad to support use across preconception, pregnancy and post-partum phases. Favourable and constructive user feedback was received.ConclusionsThe novel development of a decision aid for use in pregnancy and IBD was supported by initial user testing.

Highlights

Research has indicated a lack of disease-specific reproductive knowledge among patients with Inflam‐ matory Bowel Disease (IBD) and this has been associated with increased “voluntary childlessness”
The transcript generated from the focus group was analyzed in terms of patient concerns, patient observations as a woman with IBD who is considering pregnancy and patient recommendations for the decision aid and specialist care
Patient concerns regarding conception and pregnancy included (a) the negative impact of active disease on both maternal and fetal/infant health (b) the potential impact of current and past drug therapies on the fetus/infant (c) the ability to care for a child in the setting of being unwell and (d) the ability to conceive, maintain a pregnancy and deliver in the setting of previous abdominal surgery

Summary

Introduction

Research has indicated a lack of disease-specific reproductive knowledge among patients with Inflam‐ matory Bowel Disease (IBD) and this has been associated with increased “voluntary childlessness”. A lack of knowledge may contribute to inappropriate medication changes during or after pregnancy. Williams et al BMC Gastroenterol (2021) 21:302 of IBD-specific reproductive knowledge among patients has been associated with increased “voluntary childlessness”, with reported rates of 18% and 14% in patients with CD and UC respectively compared with 6.2% in the general population [2, 3]. A lack of patient and clinician knowledge may contribute to inappropriate medication cessation during attempts at conception or pregnancy and increase the risk of flares, despite the expanding data supporting drug safety in pregnancy [4,5,6,7]. With appropriate information provided to both patients and clinicians, it is anticipated that a greater proportion of patients will receive necessary IBD therapy that has not otherwise been prescribed or adhered to due to misinformation, with resultant optimization of maternal and foetal outcomes [8]

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