OBJECTIVES: Shared decision making (SDM) is a strategy to facilitate patient-centered care and is increasingly important in inflammatory bowel disease (IBD). This study aimed to explore the experiences, barriers, and opportunities of stakeholders with respect to SDM in IBD clinical practice.

METHODS: This qualitative study consisted out of semi-structured interviews with IBD patients (n=15), IBD nurses (n=12), and gastroenterologists (n=11) in Belgium. Qualitative data was analyzed thematically using the framework analysis. Patients, IBD nurses, gastroenterologists, and an SDM expert were involved as active researchers throughout the study.

RESULTS: Patients reported a lack of knowledge regarding the term SDM. Gastroenterologists and IBD nurses had difficulties in providing a definition that was consistent with the literature, although they were familiar with the concept. As a result, patients reported to be involved in the decision-making process to varying degrees and in different ways. Key barriers for the implementation of SDM include time constraints, poor communication skills of gastroenterologists, insufficient patient-centered information, cognitive impairment and low health literacy of patients, and the belief of patients in a more paternalistic approach. Participants discussed the crucial role of IBD nurses in resolving some of the existing barriers, as they can provide emotional, informational, and decision support.

CONCLUSIONS: Participants recognized the importance of SDM in IBD, although indicating that not all steps are systematically applied in routine clinical practice. Its implementation in IBD is currently hindered by diverse and interrelated barriers. Results from this study point towards the need for SDM skills training and organizational changes, such as the recognition and a more strengthened role of the IBD nurse in the SDM process. Further, patient organizations can have an important role in creating awareness about SDM among patients and in stimulating patient empowerment. Results of this study can be used to inform multi-stakeholder concerted interventions for implementing SDM in IBD.