Research 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. The 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. Issues 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. The novel development of a decision aid for use in pregnancy and IBD was supported by initial user testing.

中文翻译：

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妊娠期炎症性肠病的共同决策：以患者为导向的决策辅助设计

研究表明，炎症性肠病 (IBD) 患者缺乏特定疾病的生殖知识，这与“自愿无子女”的增加有关。此外，缺乏知识可能会导致怀孕期间或之后不适当的药物改变。决策辅助工具已被证明可以支持怀孕以及其他多种慢性疾病的决策。尽管受孕前咨询有益且患者渴望决策支持工具，但尚未确定已发布的 IBD 妊娠决策辅助工具。本研究旨在开发和测试包含 IBD 环境中生殖决策的决策辅助工具的可行性。在 IBD 决策辅助 (PIDA) 的妊娠开发中实施了国际患者决策辅助标准。成立了一个多学科指导委员会。对患者和临床医生进行了焦点小组讨论，以探讨 IBD 生殖决策过程中的重要主题。设计了一个PIDA原型；进行了患者访谈以进一步了解患者的观点并测试原型的可行性。对于在 IBD 环境中遇到怀孕决定的患者和临床医生来说，被认为重要的问题包括生育能力、受孕时间、遗传、药物、婴儿健康、手术的影响、避孕、营养和母乳喂养。重点是在病程早期提供孕前咨询。与受孕和药物相关的决定被选为 PIDA 当前的重点，然而，内容包含范围很广，支持在孕前、怀孕和产后阶段使用。收到了积极和建设性的用户反馈。用于妊娠和 IBD 的决策辅助的新开发得到了初始用户测试的支持。