Development and Usability Testing of a Patient Decision Aid for Patients With Inflammatory Bowel Disease Using a Discrete Choice Experiment as Value Clarification Exercise

OBJECTIVES: To support patient involvement and shared decision making (SDM) for treatment choices in inflammatory bowel disease (IBD), this study aimed to develop and test a patient decision aid (PtDA).

METHODS: A multi-phase study was conducted to develop and test I(BD) SELECT using approaches recommended by the International Patient Decision Aid Standards Collaboration: 1) scope and content determination using semi-structured interviews with IBD patients (n=15) and healthcare professionals (HCPs) (n=23), 2) prototype PtDA development based on clinical guidance, and 3) iterative alpha testing of the prototype PtDA with IBD patients (n=17) and HCPs (n=18). Qualitative data was analyzed thematically. Patients, an IBD nurse, gastroenterologists, a patient organization representative, an SDM expert, and a discrete choice experiment (DCE) expert were involved as researchers throughout the study.

RESULTS: Based on the interviews, we included the choice between different biologicals and small molecules as the options in the PtDA. A web-based prototype PtDA was created including 20 DCE questions as the value clarification exercise. Further, the PtDA was programmed to generate a personal report including patients’ preferences as revealed in the DCE questions next to patients remarks and clinical characteristics (self-reported). Alpha testing showed a mean System Usability Scale score of 78.94/100. Generally, participants had positive feedback about the lay-out, content, and quality of the PtDA but believed several adjustments were needed to improve the user-friendliness (e.g. minimizing complex medical vocabulary) and content (e.g. adding certain information in the educational component). Most participants wanted to use the PtDA in practice.

CONCLUSIONS: I(BD) SELECT received positive feedback from stakeholders during alpha testing, highlighting its potential to facilitate SDM and empower IBD patients to be active participants in the decision-making process. Further refinement through beta testing will optimize usability and effectiveness before broader implementation.