Does better disease-related education improve quality of life? A survey of IBD patients.

The importance of health-related quality of life (HRQOL) assessment in patients with chronic disorders such as inflammatory bowel disease (IBD) is now acknowledged by researchers. Of the many factors that may influence HRQOL, patient knowledge of the condition and disease-related information provision have hitherto not been studied. In all, 250 patients with inactive IBD (UC = 128, CD = 122) were randomly chosen from our IBD clinic. Two sets of questionnaires [initially a standard questionnaire to assess level of disease-related information by a patient information score (PIS), followed by a HRQOL questionnaire] were sent to each patient. In the PIS, a score of 7 or more indicated satisfactory disease-related knowledge and in the HRQOL, a score less than 51 suggested a normal QOL, and a score above 60 significantly impaired QOL. A total of 168 patients (66%) returned both the questionnaires (UC = 91, CD = 77). The mean QOL in patients with UC and CD was 62.2+/-8.3 and 63.9+/-9.5 respectively, (P = NS). 99 patients (59%) had significantly impaired QOL (mean score 65+/-7.6) with only 12 patients (8%), 6 in each group, having a normal QOL. Mean PIS score for the patients was 7.04+/-0.1; 53% of the UC patients and 75% of the CD patients (P = 0.006) were considered well informed (ie, PIS scores of 7 or more). The mean PIS for UC patients was 6.5+/-0.4 vs 7.5+/-0.2 for the CD group (P = 0.001). There was, however, no correlation seen between the QOL and PIS scores, both for UC and CD patients (R = 0.3). In conclusion, most patients with IBD have impaired QOL, despite of having inactive disease. The level of disease-related knowledge appears to be better in patients with CD, although that does not seem to affect QOL.