Generalisability of the inflammatory bowel disease knowledge inventory device to assess disease-related knowledge in Australian children

Aim: Disease knowledge may affect disease outcome, adherence to therapy and quality of life in inflammatory bowel disease (IBD). The IBD knowledge inventory device (IBD-KID) was specifically developed and validated for children to measure disease-specific knowledge. The relevance of the IBD-KID was now determined in an Australian population of children with IBD.

Methods: Twenty children with an established diagnosis of IBD for 2 years or greater, and their parents, were asked to complete the IBD-KID and the Crohn's and Colitis Knowledge Score (CCKNOW). Twenty children recently diagnosed with IBD completed the IBD-KID alone, as did three populations of health workers within a paediatric hospital.

Results: Children with longstanding disease scored 12.1 ± 4.6 (from 23 questions) in the IBD-KID and 13.2 ± 5 (from 30 questions) in the CCKNOW device (P < 0.05). Children had fewer 'don't know' answers with the IBD-KID. Areas of poor knowledge included aspects of IBD therapies and IBD outcome. Recently diagnosed children performed less well than those with longer period of illness (P = 0.03). Parents scored more highly in both scores than their children (16.8 ± 2.7 and 18.1 ± 4.2: P = 0.008). Medical staff had higher scores in the IBD-KID (19.5 ± 2.1) than did nursing (13.2 ± 2.7) or clerical (7.3 ± 4.1) staff (P < 0.005).

Conclusions: The IBD-KID provides a reliable and appropriate assessment of disease knowledge in Australian children with IBD and can now be used in activities targeting disease-related education and as a tool to ascertain where knowledge can be improved in children with IBD.