Inflammatory bowel disease-patients are insufficiently educated about the basic characteristics of their disease and the associated risk of colorectal cancer

Dig Liver Dis. 2010 Nov;42(11):777-84. doi: 10.1016/j.dld.2010.03.023. Epub 2010 May 15.


Background/aim: Limited data are available about inflammatory bowel disease-patients' knowledge of disease and associated risks. We assessed patients' knowledge of disease and its associated risks/complications, and their perspectives on current recommendations for colectomy when low-grade dysplasia is found.

Methods: Inflammatory bowel disease-patients at a regional patient-information-day were asked to anonymously complete a survey (group-A). A 2nd group was recruited online through the Dutch inflammatory bowel disease-patients' association (group-B).

Results: In group-A, 109 inflammatory bowel disease-patients completed the survey (76% Crohn's disease, 24% ulcerative colitis, 78% female). Thirty-three patients (30%) were unaware of their disease-localization; 30% thought inflammatory bowel disease shortened their life-expectancy; 26% thought it was likely for a severe complication to occur during colonoscopy. Patients estimated their 10-year colorectal carcinoma-risk at 25%. Mean perceived colorectal carcinoma-associated mortality-risk was 13%. Patients would agree to colectomy if their current colorectal carcinoma-risk was at least 53% and 70% would refuse physicians' recommendation for colectomy if dysplasia were detected with a 20% risk of concomitant colorectal carcinoma. Group-B (n=393 inflammatory bowel disease-patients) verified the results above. However, fewer patients (52%) would refuse physicians' recommendation for colectomy, p=0.01.

Conclusion: Inflammatory bowel disease-patients are ill-informed about their disease and its associated risks. Improvement of patient-education is necessary to appropriately involve patients in the decision-making process.

MeSH terms

  • Adult
  • Choice Behavior
  • Cohort Studies
  • Colectomy / adverse effects
  • Colectomy / psychology
  • Colonoscopy / adverse effects
  • Colonoscopy / psychology
  • Colorectal Neoplasms* / etiology
  • Colorectal Neoplasms* / mortality
  • Colorectal Neoplasms* / psychology
  • Emotions
  • Female
  • Humans
  • Inflammatory Bowel Diseases* / complications
  • Inflammatory Bowel Diseases* / diagnosis
  • Inflammatory Bowel Diseases* / epidemiology
  • Inflammatory Bowel Diseases* / psychology
  • Inflammatory Bowel Diseases* / surgery
  • Life Expectancy
  • Male
  • Middle Aged
  • Netherlands
  • Patient Education as Topic*
  • Research Design
  • Risk Assessment
  • Surveys and Questionnaires
  • Treatment Refusal / psychology