Background: Recent studies show that a majority of IBD patients receive insufficient information regarding their disease. The wide range of knowledge needs necessitates resources that may improve patient adherence and outcomes. The aims of this nationwide survey of IBD patients were to relate specific patient profiles to unique information needs, with the intent of constructing an interactive, patient tailored, knowledge resource.
Methods: Patients from the Israeli Crohn's & Colitis Foundation were asked to complete a questionnaire aimed at rating the amount of information received at time of diagnosis, the importance of information to be delivered for newly diagnosed patients, and the current importance of information topics for patients with longstanding disease. We performed an exploratory factor analysis of the baseline questionnaire responses, and analyzed the responses of a predetermined set of 20 patient profiles generated by the study team
Results: A total of 571 patients (52% males) completed the questionnaire, 382 with Crohn's disease, 179 with ulcerative colitis and 10 with IBD-Undefined. Little information was received at disease onset, with a low rating spanning the whole questionnaire (average rating of 0.9 out of 5). The rating of importance of information topics averaged 4.2/5, thus reflecting unmet needs. Average rating of current information needs was also rated high (average 3.5/5), implying continued relevance to the experienced patient. Factor analysis for current needs grouped the responses into six knowledge domains (factors), namely: therapy & complications; nutrition; stress & coping; social & religion; work & disability; and long term complications, all rated as highly important (6/8), except for social & religion (3.2/8). Analysis of the data by single questions or by knowledge domains did not yield specific associations to demographic and clinical characteristics. Analysis by patient profiles found significant, clinically relevant associations to specific knowledge domains. For instance, patients newly diagnosed at an age>50 and patients diagnosed more than 10 years ago showed less interest in information regarding work & disability, while patients with active disease showed more interest in information regarding work & disability, stress & coping and therapy & complications. Patients in remission but on mesalamine or no therapy showed less interest in all factors except for nutrition and long term complications
Conclusions: Our study clearly demonstrates unmet patient information needs, spanning all knowledge domains. Analysis per compound patient profiles revealed unique associations to information topics, and paves the way to building a patient tailored information resource