Shared decision making in inflammatory bowel disease: a qualitative study with patients, gastroenterologists, and nurses.
9 affiliations
- 1Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Herestraat 49 box 521, Leuven, 3000, Belgium. [email protected].
- 2Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Herestraat 49 box 521, Leuven, 3000, Belgium.
- 3Department of Gastroenterology, az Vesalius, Tongeren, Belgium.
- 4Belgian IBD Nurses and Study Coordinators Association (BINAstoria), Brussels, Belgium.
- 5Department of Gastroenterology and Hepatology, University Hospitals Leuven, KU Leuven, Leuven, Belgium.
- 6Department of Chronic Diseases and Metabolism, KU Leuven, Leuven, Belgium.
- 7Crohn & Colitis Ulcerosa Vereniging (CCV-vzw), Leuven, Belgium.
- 8Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
- 9Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Herestraat 49 box 521, Leuven, 3000, Belgium. [email protected].
Abstract
Background
Shared decision making (SDM) is a key component of patient-centered care and is increasingly emphasized in the management of inflammatory bowel disease (IBD). However, insights into the implementation of SDM in IBD care and influencing factors remain limited. This study aimed to (1) investigate the implementation of SDM in IBD clinical practice, including the role of the IBD nurse in this process, and (2) identify barriers and facilitators for implementation.Methods
Semi-structured interviews were conducted with IBD patients (n = 15), gastroenterologists (n = 11), and IBD nurses (n = 12) across Belgium. Interviews were transcribed verbatim and analyzed using a thematic framework method.Results
While gastroenterologists reported routinely incorporating most SDM steps into practice, patients described inconsistencies, particularly around emotional support, clarity of information, and elicitation of preferences. Participants viewed IBD nurses as essential partners in the SDM process, complementing the role of gastroenterologists by reinforcing information, facilitating communication, and addressing patients' physical, emotional, and social needs. Low health literacy and disease-related knowledge among patients, poor communication, and time constraints emerged as major barriers. In contrast, key facilitators were the perceived clinical and relational benefits of SDM, greater awareness of SDM, and enhanced education for both patients and providers.Conclusions
Although SDM is recognized in IBD care, its implementation remains inconsistent due to structural and interpersonal barriers. Results from this study point toward the need for SDM training and organizational changes, such as recognizing and further strengthening the role of the IBD nurse in the SDM process. Demonstrating and promoting the intrinsic and consequential benefits of SDM, such as improved care quality, patient adherence, and professional fulfillment, may further support its widespread adoption. These findings can inform multi-stakeholder strategies for embedding SDM more consistently in IBD care.
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BibTeX
@article{schoefs2026shared,
title = {{Shared decision making in inflammatory bowel disease: a qualitative study with patients, gastroenterologists, and nurses.}},
author = {Elise Schoefs and Lauren Michiels and Noortje Straetemans and Marc Ferrante and Bram Verstockt and João Sabino and Lynn Debrun and Elien Loddewijkx and Chantal Van Audenhove and Séverine Vermeire and Isabelle Huys},
journal = {BMC health services research},
year = {2026},
month = oct,
doi = {10.1186/s12913-026-15552-5},
url = {https://europepmc.org/article/MED/42907825},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Shared decision making in inflammatory bowel disease: a qualitative study with patients, gastroenterologists, and nurses.
AU - Elise Schoefs
AU - Lauren Michiels
AU - Noortje Straetemans
AU - Marc Ferrante
AU - Bram Verstockt
AU - João Sabino
AU - Lynn Debrun
AU - Elien Loddewijkx
AU - Chantal Van Audenhove
AU - Séverine Vermeire
AU - Isabelle Huys
PY - 2026
DA - 2026/10/05
JO - BMC health services research
DO - 10.1186/s12913-026-15552-5
UR - https://europepmc.org/article/MED/42907825
AB - Background Shared decision making (SDM) is a key component of patient-centered care and is increasingly emphasized in the management of inflammatory bowel disease (IBD). However, insights into the implementation of SDM in IBD care and influencing factors remain limited. This study aimed to (1) investigate the implementation of SDM in IBD clinical practice, including the role of the IBD nurse in this process, and (2) identify barriers and facilitators for implementation.Methods Semi-structured interviews were conducted with IBD patients (n = 15), gastroenterologists (n = 11), and IBD nurses (n = 12) across Belgium. Interviews were transcribed verbatim and analyzed using a thematic framework method.Results While gastroenterologists reported routinely incorporating most SDM steps into practice, patients described inconsistencies, particularly around emotional support, clarity of information, and elicitation of preferences. Participants viewed IBD nurses as essential partners in the SDM process, complementing the role of gastroenterologists by reinforcing information, facilitating communication, and addressing patients' physical, emotional, and social needs. Low health literacy and disease-related knowledge among patients, poor communication, and time constraints emerged as major barriers. In contrast, key facilitators were the perceived clinical and relational benefits of SDM, greater awareness of SDM, and enhanced education for both patients and providers.Conclusions Although SDM is recognized in IBD care, its implementation remains inconsistent due to structural and interpersonal barriers. Results from this study point toward the need for SDM training and organizational changes, such as recognizing and further strengthening the role of the IBD nurse in the SDM process. Demonstrating and promoting the intrinsic and consequential benefits of SDM, such as improved care quality, patient adherence, and professional fulfillment, may further support its widespread adoption. These findings can inform multi-stakeholder strategies for embedding SDM more consistently in IBD care.
SN - 1472-6963
ER -