Published online Aug 14, 2019. doi: 10.3748/wjg.v25.i30.4246
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.
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.