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Shared decision making in pregnancy in inflammatory bowel disease: design of a patient orientated decision aid Williams, Astrid-Jane; Karimi, Neda; Chari, Radha; Connor, Susan; De Vera, Mary; Dieleman, Levinus A.; Hansen, Tawnya; Ismond, Kathleen; Khurana, Rshmi; Kingston, Dawn; et al.
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.
Item Metadata
| Title |
Shared decision making in pregnancy in inflammatory bowel disease: design of a patient orientated decision aid
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| Creator | |
| Publisher |
BioMed Central
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| Date Issued |
2021-07-30
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| Description |
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.
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| Subject | |
| Genre | |
| Type | |
| Language |
eng
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| Date Available |
2021-08-06
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| Provider |
Vancouver : University of British Columbia Library
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| Rights |
Attribution 4.0 International (CC BY 4.0)
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| DOI |
10.14288/1.0401246
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| URI | |
| Affiliation | |
| Citation |
BMC Gastroenterology. 2021 Jul 30;21(1):302
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| Publisher DOI |
10.1186/s12876-021-01853-y
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| Peer Review Status |
Reviewed
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| Scholarly Level |
Faculty; Researcher
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| Copyright Holder |
The Author(s)
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| Rights URI | |
| Aggregated Source Repository |
DSpace
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Item Media
Item Citations and Data
Rights
Attribution 4.0 International (CC BY 4.0)