BMC Gastroenterol. 2021 Jul 30;21(1):302. doi: 10.1186/s12876-021-01853-y.

Astrid-Jane Williams ^1 2, Neda Karimi ^3 4, Radha Chari ⁵, Susan Connor ^6 3 4, Mary A De Vera ⁷, Levinus A Dieleman ⁵, Tawnya Hansen ⁷, Kathleen Ismond ⁵, Rshmi Khurana ⁵, Dawn Kingston ⁸, Katie O'Connor ⁹, Daniel C Sadowski ⁵, Flora Fang-Hwa ⁷, Eytan Wine ⁵, Yvette Leung ⁷, Vivian Huang ^5 9

Author information

• ¹Department of Gastroenterology and Hepatology, Liverpool Hospital, Elizabeth St, Liverpool, Sydney, NSW, 1871, Australia. astridjane.williams@health.nsw.gov.au.
• ²South Western Sydney Clinical School, The University of New South Wales, Sydney, Australia. astridjane.williams@health.nsw.gov.au.
• ³South Western Sydney Clinical School, The University of New South Wales, Sydney, Australia.
• ⁴Ingham Institute for Applied Medical Research, Sydney, NSW, Australia.
• ⁵University of Alberta, Edmonton, AB, Canada.
• ⁶Department of Gastroenterology and Hepatology, Liverpool Hospital, Elizabeth St, Liverpool, Sydney, NSW, 1871, Australia.
• ⁷University of British Columbia, Vancouver, BC, Canada.
• ⁸University of Calgary, Calgary, AB, Canada.
• ⁹Mount Sinai Hospital, Sinai Health System, University of Toronto, Toronto, ON, Canada.

Abstract

Background: 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.

Methods: 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.

Results: 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.

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