Impact of ulcerative colitis from patients' and physicians' perspectives: Results from the UC: NORMAL survey

Inflamm Bowel Dis. 2009 Apr;15(4):581-8. doi: 10.1002/ibd.20793.


Background: Two national internet surveys were conducted to understand how patients perceive the impact of ulcerative colitis (UC) relative to gastroenterologists.

Methods: In total, 451 patients with UC (20% mild, 63% moderate, 13% severe, 4% unsure [patient self-assessment]) were recruited for one survey and 300 gastroenterologists (not associated with the patients) were recruited for the other survey.

Results: Patients reported, on average, 8 (self-defined) flares per year; this was more than the number anticipated by gastroenterologists. Sixty-two percent of patients with UC reported that their disease made it difficult to lead a normal life, compared with gastroenterologists' estimations of 36%. Only 42% of patients believed that being in remission could mean living without symptoms. Both patients and gastroenterologists reported that it is difficult for patients to take medication as prescribed every day (42% and 90%) and that managing UC medication is a struggle for patients (49% and 41%). Forty-six percent of patients admitted nonadherence to their therapy over the previous week, while gastroenterologists believed that 41% of their patients were not adherent.

Conclusions: These surveys identified disparities between patients' and gastroenterologists' perceptions of the impact of UC on patients' lives. The results suggest that more patients than gastroenterologists estimated chose to adapt their lives to accommodate UC rather than act to optimize therapy and adherence. Improved communication between patients and gastroenterologists, as well as better management strategies and education are necessary.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Colitis, Ulcerative / drug therapy
  • Colitis, Ulcerative / physiopathology*
  • Colitis, Ulcerative / psychology*
  • Cost of Illness
  • Data Collection
  • Female
  • Gastroenterology
  • Gastrointestinal Agents / therapeutic use
  • Humans
  • Male
  • Medication Adherence
  • Middle Aged
  • Patients / psychology*
  • Physician-Patient Relations*
  • Physicians / psychology*
  • Young Adult


  • Gastrointestinal Agents