Determinants of disease-specific knowledge among children with inflammatory bowel disease and their parents: A multicentre study

BACKGROUND: Disease knowledge is associated with increased treatment compliance and improvement of symptoms in inflammatory bowel disease (IBD). IBD-knowledge inventory device (IBD-KID) was developed and validated specifically as a tool to measure disease-related knowledge in children with IBD and their parents. AIM: To prospectively assess the determinants of disease-related knowledge regarding paediatric IBD patients and their parents, using the IBD-KID. METHODS: A questionnaire-based survey was carried out in paediatric patients and their parents. The determinants of patients’ and parents’ IBD-KID scores were assessed according to hierarchical linear regression models. RESULTS: The study group consisted of 269 IBD patients and 298 parents. The patients’ mean (standard deviation, SD) IBD-KID score was 10.87 (± 3.97), while the parents’ was 11.95 (± 3.97). Both groups exhibited poor knowledge of the side effects of steroid therapy, the role of surgical treatment in IBD, dietary restrictions and the risks associated with the use of herbal medicines. The patients’ IBD-KID scores were statistically associated with patient sex [B coefficient (standard error, SE) = 1.03 (0.44), P = 0.021] and patient age [B (SE) = 0.03 (0.01), P < 0.001]. The parents’ IBD-KID scores were significantly related to patient age [B (SE) = 0.02 (0.01), P = 0.003], and treatment with immunosuppressive agent [B (SE) = 1.85 (0.48), P < 0.001]. The final models explained 26.9% of the variance of patients’ IBD-KID scores and 18.5% of the variance of parents’ scores. CONCLUSION: The variables originating from parents’ knowledge were significantly associated with patients’ IBD-KID scores. The study results indicate the need to implement better education programmes for patients and parents.