Patient and Physician Perceptions on Living with Ulcerative Colitis: Results from Two Internet Surveys

Abstract

Table: Incidence of Renal Insufficiency and Leukopenia with 5-ASA MedicationsPurpose: To understand how the perception of the impact of ulcerative colitis (UC) on patients’ lives differs between patients and gastroenterologists. Methods: Two national internet surveys were conducted: one in patients with UC and one in gastroenterologists. Here we present selected results from these surveys. Patients with a history of colectomy were excluded. Results: 451 patients with UC (20% mild, 63% moderate, 13% severe [as informed by their physician]) and 300 gastroenterologists (unassociated with the patients) were included in the surveys. In total, 36% of patients reported having ≥6 flares per year (subjective self-definition). This number exceeded gastroenterologists’ expectations for a patient population with this distribution of disease severities. When patients were asked what being in remission meant to them, 44% believed it meant living with UC symptoms, but managing life without interruption. Although ∼55% of patients reported being prescribed 5-aminosalicylic acid (5-ASA) therapy, the gastroenterologists reported prescribing 5-ASA therapy to 87% of their patients. Both patients and gastroenterologists reported that managing UC medication is a struggle for patients (49 and 41%) and that it is difficult for patients to take medication as prescribed every day (42 and 90%). Indeed, 46% of patients admitted to not taking all of their medication in the past week, while gastroenterologists believed that 41% of their patients were not adherent. Conclusion: These surveys show important disparities between how patients and gastroenterologists perceive the impact of living with UC. Results suggest that many patients have adapted to live with their symptoms rather than acting to optimize therapy and compliance. Improvements in management strategies, education, and communication among patients and gastroenterologists are necessary.