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

  • Baars J
  • Siegel C
  • van't Spijker A
 et al. 
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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.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).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.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

Author-supplied keywords

  • Adult; Choice Behavior; Cohort Studies; Colectomy
  • adverse effects/psychology; Colonoscopy
  • adverse effects/psychology; Colorectal Neoplasms
  • complications/diagnosis/epidemiology/psychology/s
  • etiology/mortality/psychology; Emotions; Female;
  • psychology

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  • Judith E Baars

  • Corey A Siegel

  • Adriaan van't Spijker

  • Tineke Markus

  • Ernst J Kuipers

  • C Janneke van der Woude

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