Should Inflammatory Bowel Disease Clinicians Provide Their Patients with e-Health Resources? Patients' and Professionals' Perspectives

Introduction: The internet is emerging as a source of information for patients with inflammatory bowel disease (IBD). However, it is not always reliable and may cause anxiety. We aim to assess patients' information habits and patients' and professionals' perceptions of a national website integrated as an educational resource for the IBD unit.Methods: Patients aged 18-65 years, comfortable with the internet, and attending follow-ups at participating IBD units (March-June 2019) and their professionals were invited to evaluate a recommended website through an online survey.Results: Three hundred eighty-nine patients and 95 professionals completed the survey. The internet (n = 109; 27.4%) was the second preferred source of information after the health care team (n = 229; 57.5%). Eighty percent of patients searched the internet for information on their disease and 28.6% did so at least once a week (n = 114), especially newly diagnosed ones (<2 years). Patients valued a website recommended by their professional (n = 379; 95.2%) and endorsed by the National Working Group (n = 377; 94.7%). They would attend online educational initiatives on the website (n = 279; 70.1%) and complete periodical surveys to improve its usefulness (n = 338; 84.9%). According to IBD professionals, this type of website is the best patient source of supplementary information (n = 76; 80%) and they prescribe it to most patients (67.0 +/- 25.2%), especially the newly diagnosed patients (52.7 +/- 26.5%). It effectively integrates routine face-to-face education (n = 95; 100%).Conclusions: Patients of IBD units, especially newly diagnosed ones, appreciate a trusted e-Health resource to back up professional information. The favorable opinion of patients and professionals will allow its use in training interventions.

Automated summary

This study investigated the information habits of patients with inflammatory bowel disease (IBD) and the perceptions of both patients and professionals regarding a national website as an educational resource. The results showed that 80% of patients searched the internet for information on their disease, and most patients valued a website recommended by their professional, showing willingness to participate in online educational initiatives and provide feedback to improve its usefulness. Professionals believed that this type of website is the best supplementary information source for patients and prescribed it to a majority of patients, especially those who were newly diagnosed.