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

摘要

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.