Patients’ views of shared decision making in inflammatory bowel disease: a survey in China

BACKGROUND: Recently, decision-making process has become increasingly complex. But there is limited information on Chinese patients’ views of shared decision making (SDM) in inflammatory bowel disease (IBD). This questionnaire investigation aimed to understand Chinese patients’ perspectives and expectations of SDM in IBD and analyze the possible factors that influence their views. METHODS: An online survey was conducted from July 19th to 24th, 2020. A total of 1118 patients completed the survey. RESULTS: One-third of patients were dissatisfied with the current decision-making model, and the satisfaction of inpatients was lower than that of outpatients. 84% of patients preferred to participate in SDM, who were young and had a high education level, high income, commercial insurance, strong learning ability and knowledge of SDM. Most of those who did not want to participate (72%) were worried about the cost. The kind of medicine (948, 84.8%), surgical indications (505, 45.2%) and operation methods (482, 43.1%) were the topics that patients thought most require SDM. Side effects of medicine (837, 74.9%), costs of therapy (675, 60.4%), and surgical risks (563, 50.4%) were considered to be the most influential factors for SDM. 52.7% of all patients hoped experts in different disciplines would participate in SDM. The most desirable amount of time for discussion was 30 to 60 min (562/1118, 50.3%), that were associated with the cost of SDM. CONCLUSION: We can meet the needs of patients by reducing costs and strengthening online patient education and exploring a model suitable for Chinese IBD patients. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12911-021-01702-8.