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


CONCLUSIONS
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.
Baars
Judith E
JE
Department of Gastroenterology and Hepatology, Erasmus Medical Center, Rotterdam, Postbus 2040, 3000 CA Rotterdam, The Netherlands. j.baars@erasmusmc.nl
Siegel
Corey A
CA
van't Spijker
Adriaan
A
Markus
Tineke
T
Kuipers
Ernst J
EJ
van der Woude
C Janneke
CJ
D000328:Adult; D002755:Choice Behavior; D015331:Cohort Studies; D003082:Colectomy / Q000009:adverse effects / Q000523:psychology; D003113:Colonoscopy / Q000009:adverse effects / Q000523:psychology; D015179:Colorectal Neoplasms / Q000209:etiology / Q000401:mortality / Q000523:psychology; D004644:Emotions; D005260:Female; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000150:complications / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology / Q000601:surgery; D008017:Life Expectancy; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010353:Patient Education as Topic; D012107:Research Design; D018570:Risk Assessment; D011795:Surveys and Questionnaires; D016312:Treatment Refusal / Q000523:psychology