Abstract
We read with interest Fan et al. 1 ’s recent study, which explores such perception gaps between patients and gastroenterologists in Crohn’s disease (CD) management. We commend the authors on an insightful study, but we wanted to add some further insights. The study identified important differences in treatment goals, follow-up preferences, and decision-making—but missed opportunities to explore the fundamentals underlying this.
Differences in perception between patients and clinicians are not only expected but also reflect fundamentally distinct viewpoints. While clinicians apply evidence and tools to guide care, patients approach illness through the perspective of personal experience. Our role as physicians is to communicate evidence transparently and empathetically, supporting informed patient decisions even when viewpoints differ. These differences may stem from diverse educational backgrounds, cultural beliefs, and personal goals.
As with all cross-sectional research, this study offers a snapshot in time and cannot infer causality. Data collection during the COVID-19 pandemic (2020–2021) further complicates interpretation, as patient behavior and engagement were likely influenced by external limitations. This is supported by various recent studies highlighting decreased healthcare utilization during this period. 2
The study population was skewed toward urban, educated patients and tertiary-based IBD specialists, limiting generalizability. Rural patients, non-specialists, and those from less resourced settings were underrepresented, despite their differing needs and barriers. Cultural context also matters: the low rate of shared decision-making preference among Chinese patients (14%) may reflect deference to medical authority, differing from Western expectations. Recent global surveys suggest increasing demand for participatory decision-making, especially in younger and more educated populations. 3
Importantly, the exclusion of patients with recent treatment changes overlooked a key moment for patient-clinician interaction. Including inpatients and minors may have affected response quality due to illness severity and maturity, respectively. The lengthy, partly non-validated 95-question survey also risks fatigue. In contrast, validated instruments such as the IBD-KNOW tool—which builds on the original CCKNOW—offer more concise assessments. 4
The survey’s design also simplified complex attitudes into binary responses. For example, the article does not clarify whether patients declining mucosal healing goals do so due to test invasiveness, cost, or uncertainty about benefit. These are all factors that can significantly impact a patient’s decision-making.
Fan et al. offer a valuable starting point for exploring perception gaps in CD care. To meaningfully align physician and patient expectations, future studies must incorporate qualitative insights, broader populations, and longitudinal follow-up. Bridging these gaps will enhance shared decision-making and ultimately improve care.
