The knowledge and expectations about IBD - difference between pediatric patients and their parents.

BACKGROUND AND STUDY AIMS: The aim of this prospective survey was to determine and compare the knowledge of children with inflammatory bowel disease (IBD) and their parents about their disease. Furthermore, patients and parents were ask to provide the main source for disease related information and to give opinion for possible improvement.

PATIENTS AND METHODS: This was a prospective survey which included children with IBD with ≥ 12 years of age and their parents. Only ambulatory patients treated in tertiary medical center were included.

RESULTS: 38 child/parent pairs (79% mothers) were enrolled. Major differences between parents and children were in a) internet search where majority of parents (n = 28 ; 73.7%) and only 17 (44.7%) children gathered disease related information over the internet (p = 0.01) ; b) need for participation in patients' organization (97.4% parents comparing 55.3% children would like to participate ; p<0.001) and c) clinical practice with time reserved for child/adolescent to be with his/her physician alone (78.9% of parents encourage this practice comparing to 2.6% of children ; p <0.001).

CONCLUSION: This study shows significant difference between children/adolescents with IBD and their parents in several aspects that should be acknowledged before initiating changes into the clinical practice.