Patients’ Preferences regarding Shared Decision-Making in the Treatment of Inflammatory Bowel Disease: Results from a Patient-Empowerment Study

BACKGROUND: Shared decision-making is gaining favor in clinical practice, although the extent to which patients want to be involved in choosing their treatment varies substantially. Because data are lacking on the preferences of patients with chronic diseases such as inflammatory bowel disease (IBD), we wanted to assess IBD patients' preferences about being involved in such decisions. METHODS: Adult IBD patients were asked to anonymously complete an online survey on their preferences. Non-parametric tests (chi(2)) were used to determine the relationship between responses and respondents. RESULTS: The questionnaire was completed by 1,067 patients, 617 with Crohn's disease and 450 with ulcerative colitis. Patients' mean age was 43 (SD 13.7) years; the majority were female (66%). In total, 866 patients (81%) reported it as 'very important' to be actively involved in the decision-making process, and another 177 (17%) rated it as 'quite important'. When asked how their treatment could be improved, 537 patients (50%) wanted close, equitable collaboration with their physician. This preference was significantly associated with a disease duration of <or=8 years (p = 0.03). Gender and type of IBD were not significantly associated with patients' preferences. CONCLUSIONS: This study demonstrates IBD patients' desire to be actively involved in the decision-making process. Further research is needed on physicians' perspectives on shared decision-making, and on finding predictive factors for developing a model for shared decision-making in IBD.