Perspectives From Patients and Gastroenterologists on De-escalating Therapy for Crohn's Disease.

In Crohn's disease, combination therapy with anti-tumor necrosis factor (anti-TNF) agents and azathioprine/mercaptopurine has been shown to be superior to monotherapy with one of these treatments alone.1 This combination has its best success rate when used early in the course of treatment.2 However, because of the significant cost of these drugs and concerns over long-term side effects,3,4 many patients and providers often ask about stopping one or both of these medications.

Gastroenterologists' Views of Shared Decision Making for Patients with Inflammatory Bowel Disease.

BACKGROUND: There is limited information on gastroenterologists' perspectives of shared decision making (SDM) in discussions of therapeutic agents with inflammatory bowel disease (IBD) patients. AIMS: To examine gastroenterologists' perspectives about SDM with IBD patients, using a novel statistical hybrid approach to analyze qualitative data. METHODS: Physician interviews and online surveys were conducted from a panel of gastroenterologists in April 2012. Gastroenterologists were asked about their barriers to SDM, SDM practices, relationship to their patients, knowledge of SDM, and insights into SDM implementation. Key audio excerpts adapted from the interviews were used for moment-to-moment affect trace analysis in an online survey. Cluster analysis was used to segment gastroenterologists into mutually exclusive provider groups. RESULTS: One hundred and six gastroenterologists completed the survey (88 % male; 55 % ≤ 50 years of age). Over three-fourths of gastroenterologists were familiar with SDM (77 %). The vast majority of gastroenterologists (80 %) tried to use a form of SDM with their patients; only 12 % stated that they have a systematic, consistent, and formally documented approach to SDM. Three unique physician clusters were identified: SDM Believers (20 %, n = 20); SDM Skeptics (47 %, n = 47); and SDM Enthusiasts (34 %, n = 34). The three key barriers to practicing SDM were lack of the following: time (74 %), reimbursement (70 %), and tools (51 %). Twenty-two percent of gastroenterologists do not currently use SDM tools. CONCLUSIONS: Gastroenterologists lack the systematic approaches and tools for implementing SDM within their IBD practices. These data offer a foundation for future research in developing and testing SDM programs for gastroenterologists and their IBD patients.

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.

Patients with Ulcerative Colitis Are More Concerned About Complications of Their Disease than Side Effects of Medications.

BACKGROUND: Patients with ulcerative colitis (UC) are often fearful about medication side effects and how the disease will affect their future. Our aim was to better understand what aspects of UC, and UC management, are most concerning to patients, and how they would like to be informed about treatment options. METHODS: A Web-based survey was sent to UC patients throughout the United States and Australia. In addition to standard closed-response questions, audio clips were embedded in the survey and respondents showed their strength of agreement or disagreement using moment-to-moment affect-trace methodology. Standard quantitative analysis was used for the survey results, and cluster analysis was performed on the affect-trace responses. RESULTS: A total of 460 patients with UC (370 patients from the United States and 90 patients from Australia) responded to the survey. Of them, 53% of the respondents were women, with a mean age of 49 (range 19-81) years. Most patients (87%) wanted to share treatment decision making with their doctors. The majority, 98%, wanted more than just a basic understanding of their disease. Patients were most concerned about the risk of colorectal cancer (37%), and the possible need for an ileostomy (29%). Only 14% of patients indicated that side effects from medications were their biggest concern. On affect-trace analysis, the most divergence in opinion centered on the appropriate timing for colectomy. CONCLUSIONS: To facilitate informed treatment decisions for UC patients, in addition to reviewing the benefits and risks of medications, it is also important to discuss the best strategies for decreasing the risk of colectomy and colorectal cancer.