Development and Validation of a Pediatric IBD Knowledge Inventory Device: The IBD-KID

Objectives:Questionnaires exist to assess inflammatory bowel disease (IBD)-related knowledge of adults. Owing to wording and content concerns, these were believed to be inappropriate for use in pediatric patients. The aim of this study was to develop a questionnaire to assess disease-related knowledge of pediatric patients with IBD and their parents.Methods:Following a formal process of item generation and reduction, the IBD-Knowledge Inventory Device was developed and pilot tested. It was administered to 10- to 17-year-old patients with IBD, and to 1 of each of their parents. To evaluate its discriminatory validity, pediatric residents, nurses, and ward clerks completed the questionnaire.Results:A total of 99 patients (mean 42, Crohn disease 46, age 14(2) years) and 99 parents completed the IBD-Knowledge Inventory Device. Parent knowledge scores, 15(+/- 4), were higher than those of patients, 11(+/- 4), P<0.001. Patient and parent knowledge scores were strongly correlated (r=0.62, P<0.001). Patient knowledge score was significantly related to disease type (Crohn disease scored higher than ulcerative colitis, P=0.004) and to perceived knowledge level (P<0.001) by regression analysis. Similarly, parent knowledge score was significantly related to sex (girls scored higher, P=0.014), postsecondary education (P<0.001), and perceived knowledge level (P=0.002). The questionnaire scores of 23 were 19, 16, and 10, respectively, for residents, nurses, and ward clerks. Both residents and nurses scored significantly higher than ward clerks (P=0.001 for both).Conclusions:A valid IBD-related knowledge assessment questionnaire was developed for use in older children and adolescents with IBD and their parents.