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

Abstract

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.

Validation of a New Diabetic Retinopathy Knowledge and Attitudes Questionnaire in People with Diabetic Retinopathy and Diabetic Macular Edema

“…This finding is supported by studies in irritable bowel syndrome, which have found that the type, amount, and source of information desired by patients depend on the course of the disease (i.e., active vs. remission). 39,40 Our inclusion of items on the A scale relating to the inevitability of getting DR due to aging, genetics, or fate is important, as disease-related fatalism has been reported previously in other health fields, such as cancer. 41,42 Indeed, high fatalism scores have been found to predict non-adherence to cancer screening recommendations, 42 as well as diabetes medication adherence and self-care.…”

“…This finding is supported by studies in irritable bowel syndrome, which have found that the type, amount, and source of information desired by patients depend on the course of the disease (i.e., active vs. remission). 39 , 40 …”

Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review

“…There were four studies that evaluated patient perspectives and expectations at the time of diagnosis [33][34][35][36]. The conclusion from three of these studies was that patients expressed a greater need for knowledge at the time of diagnosis [34][35][36]. Table 2 outlines the study characteristics and outcomes.…”

Patient knowledge of fecal calprotectin in inflammatory bowel disease (IBD): An observational study in Mexico

“…In the first category of questioning about the participants' knowledge of IBD tests, participants mostly reported to not know of any test for the state of the disease. This shows that the majority of participants were uninformed, which can lead to a deterioration in the quality of life 12 . When living with a chronic disease, it is essential to know about advances in medicine, to know the signs and symptoms, and how to better diagnose and monitor the disease to improve quality of life.…”