Has patient knowledge of Inflammatory Bowel Disease improved since 1999?

Background: In the UK Inflammatory Bowel Disease (IBD) Standards have highlighted the importance of patient education and support [1]. Little literature exists however regarding the impact of these standards on patient's understanding of their disease.

Aim: To utilise the Crohn's and Colitis Knowledge Score (CCKNOW) to assess patient knowledge and make a comparison with results achieved in 1999. To assess whether disease CCKNOW scores differ between white and Asian populations in Leicestershire.

Methodology: 100 outpatients with CD or UC were prospectively enrolled to complete the CCKNOW questionnaire between May and September 2013 at two Leicestershire Hospitals.

Results: Mean and median scores for IBD patients were 10.15 (95% C.I. 9.2-11.1) and 9 (95% CI 8-11) respectively. CD (38) patients achieved a significantly higher score than UC (61), median scores of 10.5 and 9 respectively, p=0.007. CCKNOW scores achieved were significantly lower with increasing age, p=0.0006. Patient ethnicity, gender, disease duration or perceived disease activity had no significant effect upon CCKNOW score.

Conclusion: Patient understanding of inflammatory bowel disease is no better now than when assessed in 1999, median scores being 9 and 10 respectively. There are persisting knowledge deficits regarding the subjects of fertility and the complications of IBD. CCKNOW scores achieved were significantly lower with increasing age, elderly patients may therefore benefit the most from increased access to appropriate educational programmes and support.