Observational Study
Copyright ©The Author(s) 2019. Published by Baishideng Publishing Group Inc. All rights reserved.
World J Gastroenterol. Aug 14, 2019; 25(30): 4246-4260
Published online Aug 14, 2019. doi: 10.3748/wjg.v25.i30.4246
Inflammatory bowel disease patient profiles are related to specific information needs: A nationwide survey
Saleh Daher, Tawfik Khoury, Ariel Benson, John R Walker, Oded Hammerman, Ron Kedem, Timna Naftali, Rami Eliakim, Ofer Ben-Bassat, Charles N Bernstein, Eran Israeli
Saleh Daher, Tawfik Khoury, Ariel Benson, Oded Hammerman, Eran Israeli, Institute of Gastroenterology and Liver Diseases, Hadassah-Hebrew University Medical Center, Jerusalem 91120, Israel
Tawfik Khoury, Department of Gastroenterology, Galilee Medical Center, Faculty of Medicine in the Galilee, Bar-Ilan University, Nahariya 22100, Israel
John R Walker, Charles N Bernstein, IBD Clinical and Research Centre, University of Manitoba, Winnipeg, MB R3E3P4, Canada
Ron Kedem, Research Branch, IDF Medical Corps, Tel-Hashomer, Ramat Gan 52630, Israel
Timna Naftali, Institute of Gastroenterology, Meir Medical Center, Kfar-saba 4428164, Israel
Timna Naftali, Rami Eliakim, Sackler School of Medicine, Tel-Aviv University, Tel-Aviv 6997801, Israel
Rami Eliakim, Institute of Gastroenterology, Sheba Medical Center, Ramat-Gan 52630, Israel
Ofer Ben-Bassat, Institute of Gastroenterology, Rabin Medical Center, Petach-Tikva 49100, Israel
Author contributions: Daher S, Khoury T, Benson A, Bernstein CN and Israeli E formulated study concept and design; Daher S, Benson A, Naftali T, Eliakim R, Ben-Bassat O and Israeli E contributed to acquisition of data; all authors contributed to analysis, interpretation of data and critical revision of the manuscript for important intellectual content; Daher S, Khoury T, Benson A, Hammerman O and Israeli E contributed to drafting of the manuscript; Kedem R assisted with statistical analysis; Israeli E supervised the performance of all stages of the study; all authors approved the final version of the manuscript; Prof John R Walker deceased December 14, 2018.
Institutional review board statement: The study was reviewed and approved by the local ethical committee at Hadassah Medical center number 0327-14-HMO.
Informed consent statement: All study participants or their legal guardian provided informed written consent about personal and medical data collection prior to study enrolment.
Conflict-of-interest statement: The authors declare no conflict of interest regarding this manuscript.
Data sharing statement: Statistical code and dataset available from the corresponding author at [Saleh@Hadassah.org.il]. Consent was not obtained for data sharing but the presented data are anonymized and risk of identification is low.
STROBE statement: The authors have read the STORBE Checklist, and the manuscript was prepared and revised according to it.
Open-Access: This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Corresponding author: Saleh Daher, MA, MD, Attending Doctor, Attending Physician, Institute of Gastroenterology and Liver Diseases, Hadassah-Hebrew University Medical Center, Ein-Kerem, P.O.B 12000, Jerusalem 91120, Israel. saleh@hadassah.org.il
Telephone: +972-2-6778417
Received: March 18, 2019
Peer-review started: March 19, 2019
First decision: April 30, 2019
Revised: June 9, 2019
Accepted: June 22, 2019
Article in press: June 23, 2019
Published online: August 14, 2019

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.


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


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.


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.


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.

Keywords: Inflammatory bowel diseases, Information needs, Patient education, Knowledge resources, Patient profiles

Core tip: A majority of inflammatory bowel diseases (IBD) patients have inadequate information regarding their disease. Self-knowledge in chronic diseases improves long-term outcomes. We performed a nationwide survey of 571 IBD patients utilizing a 28 items questionnaire to measure the adequacy of patients' knowledge and define unmet needs, and examined whether different patient profiles drive unique needs. We found a universal lack of information among the participants regarding IBD. Different patient profiles, as derived from demographic and clinical parameters, had clinically relevant associations with unique information needs. We aim for future adoption of a personalized education approach by building a patient tailored information resource website.