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

## TL;DR

This 20-year study shows that IBD patients use online forums to address unmet information needs about diet, treatment, and managing their condition.

## Contribution

The study reveals persistent and evolving information needs of IBD patients through longitudinal analysis of online consultations.

## Key findings

- UC patients focused on diet, nutrition, and biologic treatments.
- CD patients also emphasized diet and biologics, plus pain and stress management.
- NSD patients were interested in diet, lab diagnostics, and pain therapy.

## Abstract

Background: Chronic inflammatory bowel disease significantly impacts patients’ everyday lives. Despite receiving regular medical care in gastroenterological or family medicine consultations, patients with inflammatory bowel disease (IBD) still experience a lack of information. To evaluate these deficits, we analyzed the main points of interest raised in an online consultation forum offered as a supplementary resource for patients. Methods: We analyzed 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 = 140), unclassified colitis (IBDU, n = 30), and individuals with no specified diagnosis (NSD, n = 303). Results: Patients with ulcerative colitis demonstrated interest in topics such as diet and nutrition, as well as treatment with biologics. Patients with Crohn’s disease expressed interest in diet, nutritional management, and treatment with biologics. Additionally, they showed interest in pain management, diagnostic imaging, and stress management. In the case of patients with unclassified colitis, a broad range of topics was addressed, with no single area emerging as particularly prominent. Patients with no specified diagnosis exhibited interest in diet and nutrition, laboratory diagnostics, and pain therapy. Conclusions: For patients with inflammatory bowel disease, online consultations represent a valuable complement to standard medical care. They provide additional support and contribute to enhancing patients’ confidence in managing their condition. A broad spectrum of disease-related topics was addressed during the consultations. Identified information gaps can be systematically discussed and subsequently reduced.