Different perceptions on the diagnosis and treatment of Crohn's disease between patients and gastroenterologists: a multicenter retrospective study.

BACKGROUND

Physician assessments of patient symptoms may not align with the patients' subjective experiences, potentially affecting disease management. The key drivers of patients with Crohn's disease (CD) regarding their physicians' engagement in treatment decision-making are unknown.

OBJECTIVE

This study aimed to compare cognitive differences between patients and gastroenterologists in the diagnostic and treatment processes of CD.

DESIGN

Retrospective multicenter study.

METHODS

This study was conducted at 39 inflammatory bowel disease (IBD) centers across China, ultimately recruiting 601 patients with CD and 181 gastroenterologists.

RESULTS

Regarding symptom focus, physicians were more concerned about abdominal pain, while patients, particularly inpatients, were more concerned about frequent medical visits. There were also significant differences in the treatment goals. Patients prioritized improving their quality of life, whereas physicians showed a hierarchical difference in their focus: resident and attending physicians emphasized mucosal healing, while deputy chief physicians and above placed greater importance on long-term remission (clinical, endoscopic, and histological). Regarding knowledge gaps about CD, physicians significantly overestimated patients' understanding of biologics (93.37% vs 71.55%, κ = 0.117), with inpatients showing slightly higher awareness than outpatients (73.96% vs 70.42%). Regarding follow-up compliance, the discrepancy was especially prominent: 46.96% of physicians recommended follow-up every ⩽2 months, while 61.73% of patients preferred follow-up every 6 months. The economic burden of CD revealed that 21.30% of patients were willing to spend over 50% of their household income on treatment, which far exceeded physicians' expectations (9.94%). Lastly, there was a significant divergence in decision-making models: 49.17% of physicians advocated for shared decision-making, but only 14.31% of patients agreed with this model (κ = 0.353).

CONCLUSION

There are notable cognitive disparities between patients with CD and physicians in their approaches to disease management, particularly concerning follow-up frequency and treatment options. These differences underscore the need for targeted interventions to bridge the gap between patient and physician perspectives. Therefore, future research should focus on enhancing communication between doctors and patients and enabling them to play a more active role in health management and treatment decisions.