Notable gaps between patients' and physicians' perspectives on communication and disease management in Japan: multifaceted ad hoc analyses of the global Ulcerative Colitis Narrative Survey for further optimal care.

It is important to discover the different ways that ulcerative colitis (UC) can impact individual patients, and to identify differences in views between people with UC and the doctors treating them, to improve patient care. The UC Narrative is a global survey (containing two questionnaires, one for patients, and one for doctors) that gathers information on how UC impacts patients. The survey aims to identify differences between patients' and doctors' views on communication and disease management.In this analysis, we report the results from 210 patients with UC and 151 doctors who completed the UC Narrative survey in Japan, between November 2017 and January 2018. Most patients (85%) were satisfied with their communication with their doctor. However, doctors underestimated patient satisfaction, as they believed that about 71% of their patients were satisfied with communication. Around two-thirds of patients (65%), and most doctors (82%), wanted more discussion about goals for managing or treating UC. Most patients (83%) said they were honest with their doctor when discussing their experiences with UC, although almost half of patients (45%) said they regretted not telling their doctor more. Three-quarters of doctors (75%) felt that their patients were honest with them. Doctors underestimated the importance of toileting accidents to patients and thought that healing the patients' intestine would be more important to the patients than toileting accidents. Some patients had misconceptions about treatment. For example, only 69% of patients knew that it was not OK to stop taking their UC medications once they felt better. This survey shows that even though treatment options for UC have developed, sufficient communication between patients and doctors is very important for overall patient care.