A QUESTIONNAIRE TO DETERMINE THE INFORMATION NEEDS OF PATIENTS WITH INFLAMMATORY BOWEL DISEASE

N Gauthier, MSIV, A Rostom, FRCPC

Department of Gastroenterology, University of Ottawa, Ottawa, Ontario

BACKGROUND: The purpose of this study was to survey the use of different information sources by IBD patients and to determine their satisfaction with those sources so as to establish their information needs.
METHODS: Consecutive IBD patients at the Ottawa Hospital IBD clinic with disease duration of at least 6 months were asked to complete a questionnaire that collected patient demographics, including surgeries and medication use. Categorical scales were used to determine patients' self-assessment of their knowledge, satisfaction with their knowledge, and their preferred role at times of treatment decisions. The remaining sections assessed satisfaction with, and the overall ranking of the different information sources available to patients.
RESULTS: Sixty-nine patients completed the questionnaire. Their mean age was 37.5 and 62.3% were females. Most patients had Crohn's (60.9%), 33.3% had ulcerative colitis and 2.9% had indeterminate colitis. The mean disease duration was 10 years and 36.8% had a family history of IBD. 47.7% had a college or university degree. The patients' assessment of their knowledge correlated with satisfaction with their knowledge, yet, 18% of patients reported being somewhat uninformed but were satisfied or very satisfied with their level of knowledge. Knowledge correlated with level of education. At times of important medical decisions, 78.9 % of patients wanted to make the decision as equal partners with their gastroenterologist (GI). The most frequently used information source was the GI (47.8%) vs. the family doctor (26.1%). Support groups were never used in 65.2%. Patients were satisfied with the information provided by their GI in 44.9%, family doctor in 29.0%, and the Internet in 36.2%. When patients' ranked their top three sources of information, GIs were in the top three in 92.8%, family doctors in 59.4% and the Internet in 55.1%. Overall, GIs were ranked the favorite information source by 81.3% of respondents.
CONCLUSION: GIs are an important source of information for IBD patients. The data still suggests room for improvement in improving patient satisfaction with information providers, and in capitalizing on the use of the Internet as an information source by GI associations.