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Discrepancies between patients' and gastroenterologists' perceptions of diagnosis and treatment in ulcerative
Zhenzhen Fan1, Ruixia Li1, Xin Liu2
1State Key Laboratory of Holistic Integrative Management of Gastrointestinal Cancers and National Clinical Research Center for Digestive Diseases, Xijing Hospital of Digestive Diseases, Fourth Military Medical University, Xi'an, Shaanxi, China.
Background:
Ulcerative colitis (UC), a chronic and relapsing inflammatory bowel disease, has long depended on physician-led objective evaluations for clinical management. However, physicians' assessments of symptoms often differ from patients' subjective experiences, creating a cognitive gap that may influence treatment decisions and overall disease outcomes.
Objective:
This study aimed to compare the cognitive discrepancy between UC patients and gastroenterologists throughout the diagnosis and treatment process.
Design:
Multicenter retrospective study.
Methods:
A nationwide survey was conducted across 39 Inflammatory Bowel Disease centers in China using a convenience sampling method, enrolling 457 UC patients and 170 gastroenterologists. A two-way questionnaire survey was administered to both groups to assess perceptions of disease status, treatment goals, medication use, follow-up preferences, economic burden, and decision-making models.
Results:
This multicenter study identified significant cognitive gaps between UC patients and gastroenterologists across key domains of disease management. Physicians prioritized objective clinical indicators such as hematochezia (51.18% vs 41.58%, p = 0.031), whereas patients emphasized subjective symptoms like rectal urgency (19.69% vs 4.12%, p < 0.001). Treatment goals also differed: patients valued quality-of-life improvement most, while physicians ranked endoscopic mucosal healing highest. Discrepancies extended to follow-up, with physicians favoring bi-monthly visits and patients preferring intervals exceeding 6 months. In decision-making, although 47.06% of physicians supported shared decision-making, only 10.72% of patients endorsed this model (p < 0.001). Notably, patients' willingness to allocate >50% of household income to treatment (21.44%) substantially surpassed physicians' expectations (5.29%, p < 0.001).
Conclusion:
These findings indicate a clear disconnect between current clinical management approaches and the lived experience of patients with UC in China. To bridge this gap, practice must shift toward models that actively integrate patient priorities into treatment plans.
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