Identification of the informational and supportive needs of patients diagnosed with inflammatory bowel disease: a scoping review

Background: Inflammatory Bowel Disease (IBD) affects the quality of life. Patient education and support needs are crucial components of comprehensive chronic illness care. The main purposes of this review were to (i) explore the informational and supportive needs of these patients to improve the quality of life in the existing literature and (ii) identify the gaps related to the needs of the patients in articles. Methods: The scoping review is based on the Daudt methodological framework, a modified version of Arksey and O'Malley. Electronic databases were extensively searched from January 01, 2000 to April 30, 2022. Four electronic databases (PubMed/Medline, CINAHL, APA PsycInfo, Psychology and Behavioral Sciences Collection, APA PsycArticles, and ProQuest) were searched using controlled vocabulary, and specific keywords. The searched terms were matched to each database. We manually searched two key journals, namely the Journal of Inflammatory Bowel Disease and the Journal of Crohn's and Colitis. Results: In the review, 75 studies on the assessment of the information and support needs of patients with IBD were reviewed. In this regard, 62 and 53 studies were regarding information needs and support needs, respectively. Most of the information needs of patients with IBD reported in the studies were related to diet needs, and educational needs were the most essential support needs. Conclusions: Health policymakers and managers can develop care and educational programs related to this disease in health centers according to the needs of the patients. Health professionals, especially gastroenterologists, are the primary referral sources for information on patients. Therefore, gastroenterologists can take the lead in planning and educating the patients and sharing their decisions. Systematic review registration: OSF, https://doi.org/10.17605/OSF.IO/3MWGJ.