Novel Statistical Approach to Determine Inflammatory Bowel Disease: Patients’ Perspectives on Shared Decision Making

Background Limited information is available on patients’ perspectives of shared decision-making practices used in inflammatory bowel disease (IBD). Objective The aim of this study was to examine patient insights regarding shared decision making among patients with IBD using novel statistical technology to analyze qualitative data. Methods Two 10-patient focus groups (10 ulcerative colitis patients and 10 Crohn’s disease patients) were conducted in Chicago in January 2012 to explore patients’ experiences, concerns, and preferences related to shared decision making. Key audio excerpts of focus group insights were embedded within a 25-min online patient survey and used for moment-to-moment affect trace analysis. Results A total of 355 IBD patients completed the survey (ulcerative colitis 51 %; Crohn’s disease 49 %; female 54 %; 18–50 years of age 50 %). The majority of patients (66 %) reported increased satisfaction when they participated in shared decision making. Three unique patient clusters were identified based on their involvement in shared decision making: satisfied, content, and dissatisfied. Satisfied patients (18 %) had a positive physician relationship and a high level of trust with their physician. Content patients (48 %) had a moderate level of trust with their physician. Dissatisfied patients (34 %) had a life greatly affected by IBD, a low level of trust of their physician, a negative relationship with their physician, were skeptical of decisions, and did not rely on their physician for assistance. Conclusion This study provides valuable insights regarding patients’ perceptions of the shared decision-making process in IBD treatment using a novel moment-to-moment hybrid technology approach. Patient perspectives in this study indicate an increased desire for shared decision making in determining an optimal IBD treatment plan.