Disease perceptions among people with Crohn's disease

Background: The relationship between Crohn's disease (CD) patients' perceptions of overall disease course to severity measures based on current symptomatology has not been fully explored. We sought to characterize CD patient perceptions of both overall disease course and current symptomatology based on an objective symptom scale and to explore the relationship between perceptions and current symptoms. Methods: Patients were screened by telephone and those who met inclusion criteria were invited to complete a full, self-administered online survey. Results: Respondents (n = 1205) were predominantly female (66%) and Caucasian (92%); the median age was 44 years. Self-perceived overall disease course was described as "mild" in 16%, "moderate" in 50%, and "severe" in 34%; these correlated poorly with objective measures of current symptomatology. Perceived current symptomatology was "mild" in 61%, "moderate" in 29%, and "severe" in 10%. Patients perceived their overall disease course as more severe than that reflected by current symptomatology. Among 61 % who had "mild" disease based on 30-day symptoms, only 16% rated themselves as having a mild disease course overall. Similar results among those in the "moderate" and "severe" overall disease categories indicated poor congruence between perceived overall disease course and measures of current disease symptomatology. Conclusions: Perceptions of overall disease severity may not correlate with disease activity measures based on current symptomatology. Patients rely on physicians to guide treatment choices; thus, a more complete appreciation of patients' disease perceptions that includes both overall disease course and current symptomatology may help inform treatment decisions, and could potentially improve patient care.