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

• Published in: Inflammatory bowel diseases 2002-07, Vol.8 (4), p.264-269
• Main Authors: Borgaonkar, Mark R., Townson, Gillian, Donnelly, Marysia, Irvine, E. Jan
• Format: Article
• Language: English
• Subjects: Adult; Age; Colitis; Disease Progression; Disease‐related information; Female; Health‐related quality of life; Humans; Inflammatory bowel disease; Inflammatory bowel diseases; Inflammatory Bowel Diseases - pathology; Inflammatory Bowel Diseases - psychology; Inventories; Male; Middle Aged; Patient Education as Topic; Quality of Life
• ISSN: 1078-0998; 1536-4844
• DOI: 10.1097/00054725-200207000-00005

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.