Providing disease-related information worsens health-related quality of life in inflammatory bowel disease

Background: Patients with inflammatory bowel disease (IBD) have identified a need for more information about their disease. Purpose: To assess the effect of an educational intervention on health-related quality of life (HRQOL) in patients with IBD. Methods: Consecutive ambulatory IBD patients were randomized to receive four IBD-specific educational booklets or usual care. Subjects completed two disease-specific HRQOL questionnaires-the Inflammatory Bowel Disease Questionnaire (IBDQ) (range 1-poor to 7-excellent) and the Quality Index in Crohn's and Colitis (QuICC) (range 1-excellent to 5-poor) at entry and after 2 weeks. The mean change in HRQOL scores at follow-up was compared between the education and control groups. Results: 59 subjects participated, with a mean age of 40.0 +/- 11.9 years. 34 were given educational booklets and 25 received standard care. 6 patients (10%) did not complete the study. Mean IBDQ scores became significantly worse in the education group with a change of -0.17 +/- 0.49 compared with controls at +0.28 +/- 0.62 (p = 0.006). This could be explained by worsened disease activity in the education group. There was no significant change in the QuICC scores (p = 0.61). Education group patients who had not received prior educational material had improved mean IBDQ scores of +0.24 +/- 0.47 compared with education patients who had received educational material prior to this study, with a score change of -0.25 +/- 0.46 (p = 0.09). Conclusions: The addition of educational booklets to IBD patients in a tertiary center does not improve, and may worsen, short-term HRQOL. Education of newly diagnosed or less informed patients should be studied further.