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

Abstract

Introduction: The patient-physician relationship is important in implementing appropriate management strategies. The Ulcerative Colitis (UC) Narrative Global Surveys examined patient and physician views on multiple aspects of living with UC. However, there are many other important undiscovered aspects of UC to consider for patients in Japan.

Aim: The aim of these ad hoc analyses was to identify detailed practical issues for further optimal care.

Methods: Patient and physician questionnaires covered broad aspects of living with UC and practical care. Results were compared to identify gaps. We conducted multifaceted ad hoc analyses on the responses from Japan.

Results: In Japan, 210 patients with UC and 151 physicians were surveyed. Most (64%) patients felt they would be more successful if they did not have UC. Physicians were more likely to discuss treatment-related topics, including side effects as a proxy for medication satisfaction, than quality of life-related topics. Physicians underestimated the importance to patients of toileting accidents (28% vs 54%) and overestimated the importance of mucosal healing (59% vs 29%). Although 72% of patients felt comfortable raising concerns with their physician, 53% worried about asking too many questions, as they thought they would be seen as a difficult patient, and 66% wished they had talked more about medication fears. The majority (83%) of patients said they were honest with their physician when discussing their experiences with UC, although 45% regretted not telling them more. Some (26%) patients believed, and some (20%) were not sure, that if their symptoms were under control then their UC was not active. More positively, 65% of patients agreed that UC had made them more appreciative of the important things in life.

Conclusion: This survey revealed notable gaps between patients' and physicians' perspectives. Consequently, the importance of patient-physician communication remains constant, even in the era of biologics and treat-to-target strategies.

Plain language summary: Overlap and differences in views around communication and management of ulcerative colitis between patients and doctors 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.

Keywords: communication; gap; patient; physician; questionnaire; survey; ulcerative colitis.

Figure 1.

Patient perceptions on the impact of UC: (a) patient perceptions on the impact of UC, (b) emotions experienced during a UC flarea, (c) family impacts as a result of UCa, and (d) work impacts as a result of UCa. ^aSelect responses only shown. ^b‘Any family impact’ includes all other answers represented by other bars, select responses only shown. ^c‘Any work impact’ includes all other answers represented by other bars, select responses only shown. ^dNot related to disability. UC: ulcerative colitis.

Figure 2.

Patient and physician alignment on what is important to patients when managing their UC: (a) top patient priorities for the management of UCa, (b) top patient worries due to UCb, (c) wished for more discussion about goals for managing/treating UCb, (d) wished for earlier/more discussion on treatment optionsd, (e) patient perceptions on nonadherence, and (f) physician perceptions on nonadherence. ^aPatients and physicians could select all that applied out of 22 possible options, including ‘other’ and ‘none’; values show the percentage for each option, and the overall ranking. ^bPatients and physicians could select up to three out of 13 possible options, including ‘other’ and ‘none’; physician responses were based on conversations with their patients, values show the percentage for each option, and the overall ranking. ^cPatients were asked if they wished their physician had talked more to them about their goals for managing their UC; physicians were asked if they wished they had talked more with their patients about UC treatment goals. ^dPatients were asked if they wished their physician had discussed all available treatment options earlier, so that, they had a better idea of their choices; physicians were asked if they wished they had more time to discuss all available treatment options with their patients, so their patients had a better idea of their choices. UC: ulcerative colitis.

Figure 3.

Patient and physician perceptions on discussions relating to personal topics: (a) patients are comfortable discussing emotional concerns with their physicians, (b) patients are comfortable discussing sex life and personal relationship concerns with their physicians, (c) patients—I feel comfortable raising concerns and fears with my physician, and (d) yet those who say they feel comfortable raising concerns and fears with their physician still say.

Figure 4.

Satisfaction with patient–physician communication and UC medications: (a) patient satisfaction with patient–physician communication, (b) patient satisfaction with current UC medication, (c) patient desire to discuss more about their fears of medical treatment, (d) physician perspective of patient satisfaction with patient–physician communication, (e) physician perspective of patient satisfaction with their current UC medication, and (f) physician desire to discuss more about their patients’ fears of medical treatment. UC: ulcerative colitis.

Figure 5.

Patient and physician views on patient honesty and addressing patient concerns: (a) patient and physician perceptions on patient honesty and (b) patient and physician perceptions on addressing concerns. UC: ulcerative colitis.

Figure 6.

Understanding of symptoms, disease course, and treatment: (a) patient misconceptions pertaining to inflammation-specific facts of UC, (b) patient misconceptions about ceasing medication, (c) patient misconceptions about long-term steroid use, and (d) patient misconceptions about responding to biologics. Values exceed 100% in some instances, due to rounding. UC: ulcerative colitis.

Figure 7.

Patient and physician perceptions on patient advocacy organizations: (a) patient perceptions on patient advocacy organizations, (b) physician perceptions on the importance of patient advocacy organizations to the management of UC, and (c) proportion of patients that physicians recommend patient advocacy organizations to. Values exceed 100% in some instances, due to rounding. UC: ulcerative colitis.