Information Needs of Patients with Inflammatory Bowel Disease in the Digital Era: A 20-Year Longitudinal Study

Background Chronic inflammatory bowel disease (IBD) significantly impacts patients' everyday lives. Despite receiving regular medical care in gastroenterological consultations, patients with IBD still experience a lack of information. To evaluate these deficits, we analysed the main points of interest raised in an online consultation forum offered as a supplementary resource for patients. Methods We analysed 20 years of online consultation data at three time points: 2003 (launch of the forum), 2013, and 2024, and compared them against each other. A total of 681 patients participated in the consultations during these years. The clinical profiles of the participants included Crohn's disease (CD, n=209), ulcerative colitis (UC, n=139), unclassified colitis (IBDU, n=30), and individuals with no specified diagnosis (NSD, n=303). Results Patients with UC were more interested in bowel-specific problems, extraintestinal manifestations involving skin and myalgia, diet/nutrition, weight, and treatment with biologics. Patients with CD were also interested in extraintestinal manifestations involving skin and myalgia, treatment with biologics, and diet/nutrition. Other areas of interest were imaging and laboratory analyses in the context of diagnostics, as well as pain therapy and drug dosage. Patients with IBDU were interested in disease flare-ups and treatment with biologics. NSD individuals sought information on topics such as skin manifestations and myalgia, general health deterioration, diet/nutrition, laboratory diagnostics, and pain therapy. Conclusion For patients with IBD, online consultations serve as a valuable complement to standard medical care, offering additional support and helping to build confidence. A range of disease-related topics were consulted; however, the greatest interest centred on treatment and diagnostic options.