Development of a Patient Decision Aid to Help People Living with Inflammatory Bowel Disease

BACKGROUND: Patient decision aid (PDA) is a tool, which helps the improvement of shared decisionmaking and is a part of the paradigm shift from physician-centered decisions to patient-centered shared decision making. In this study, we aimed to describe the process used to develop a PDA for facilitating shared decision-making about treatment in patients with inflammatory bowel disease (IBD) who need medication (corticosteroid, azathioprine, anti-TNF, and infliximab) or surgery. METHODS: The development process of PDA included: 1) The development of a prototype based on literature review and interview 2) ‘Alpha’ testing with patients and clinicians 3) ‘Beta’ testing in real conditions and 4) The production of a final version. This process took about 12 months (2019-2020). The participants were adult patients with IBD, gastroenterologists, and nurses. RESULTS: The final PDA contains four important sections: 1) Introduction about IBD disease, the purpose of developing PDA, and emphasis on shared decision-making 2) Benefits and risks of main medicines 3) The success rate as well as the incidence of complications after surgery, and 4) The conclusion about patients’ satisfaction with PDA to choose the treatment options. Besides, PDA evaluation in the real world setting showed that 100% of physicians (n=4) and 86% of patients (n=12) were completely satisfied with the content of the PDA and considered it applicable and useful. CONCLUSION: This PDA can help patients participate in the shared decision-making process and select the best medical and surgical treatment methods. The feedback received from clinicians and patients showed their satisfaction with using the PDA.