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

Abstract

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. 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. 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). 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.