Inflammatory bowel disease patient profiles are related to specific information needs: A nationwide survey

Daher S1, Khoury T2, Benson A2, Walker JR3, Hammerman O2, Kedem R4, Naftali T5, Eliakim R6, Ben-Bassat O7, Bernstein CN3, Israeli E2. World J Gastroenterol. 2019 Aug 14;25(30):4246-4260. doi: 10.3748/wjg.v25.i30.4246.


Author information

Institute of Gastroenterology and Liver Diseases, Hadassah-Hebrew University Medical Center, Jerusalem 91120, Israel. saleh@hadassah.org.il.

Institute of Gastroenterology and Liver Diseases, Hadassah-Hebrew University Medical Center, Jerusalem 91120, Israel.

IBD Clinical and Research Centre, University of Manitoba, Winnipeg, MB R3E3P4, Canada.

Research Branch, IDF Medical Corps, Tel-Hashomer, Ramat Gan 52630, Israel.

Institute of Gastroenterology, Meir Medical Center, Kfar-saba 4428164, Israel.

Sackler School of Medicine, Tel-Aviv University, Tel-Aviv 6997801, Israel.

Institute of Gastroenterology, Rabin Medical Center, Petach-Tikva 49100, Israel.


BACKGROUND: Inflammatory bowel diseases (IBD) is a heterogenous, lifelong disease, with an unpredictable and potentially progressive course, that may impose negative psychosocial impact on patients. While informed patients with chronic illness have improved adherence and outcomes, previous research showed that the majority of IBD patients receive insufficient information regarding their disease. The large heterogeneity of IBD and the wide range of information topics makes a one-size fits all knowledge resource overwhelming and cumbersome. We hypothesized that different patient profiles may have different and specific information needs, the identification of which will allow building personalized computer-based information resources in the future.

AIM: To evaluate the scope of disease-related knowledge among IBD patients and determine whether different patient profiles drive unique information needs.

METHODS: We conducted a nationwide survey addressing hospital-based IBD clinics. A Total of 571 patients completed a 28-item questionnaire, rating the amount of information received at time of diagnosis and the importance of information, as perceived by participants, for a newly diagnosed patient, and for the participants themselves, at current time. We performed an exploratory factor analysis of the crude responses aiming to create a number of representative knowledge domains (factors), and analyzed the responses of a set of 15 real-life patient profiles generated by the study team.

RESULTS: Participants gave low ratings for the amount of information received at disease onset (averaging 0.9/5) and high ratings for importance, both for the newly diagnosed patients (mean 4.2/5) and for the participants themselves at current time (mean 3.5/5). Factor analysis grouped responses into six information-domains. The responses of selected profiles, compared with the rest of the participants, yielded significant associations (defined as a difference in rating of > 0.5 points with a P < 0.05). Patients with active disease showed a higher interest in work-disability, stress-coping, and therapy-complications. Patients newly diagnosed at age > 50, and patients with long-standing disease (> 10 years) showed less interest in work-disability. Patients in remission with mesalamine or no therapy showed less interest in all domains except for nutrition and long-term complications.

CONCLUSION: We demonstrate unmet patient information needs. Analysis of various patient profiles revealed associations with specific information topics, paving the way for building patient-tailored information resources.

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