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.
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.
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).
A valid IBD-related knowledge assessment questionnaire was developed for use in older children and adolescents with IBD and their parents.
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*Department of Pediatrics, Division of Gastroenterology, Dalhousie University, Halifax, Nova Scotia, Canada
†Department of Paediatrics, University of Otago (Christchurch), Christchurch, New Zealand.
Address correspondence and reprint requests to Dr Anthony R. Otley, Department of Pediatrics, Division of Gastroenterology, IWK Health Centre, 5850 University Avenue, Halifax, NS, Canada B3K 6R8 (e-mail: firstname.lastname@example.org).
Received 10 April, 2013
Accepted 9 October, 2013
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This study was supported by Medical Research Council/Burroughs Wellcome Summer Studentship, Heinish Traineeship Award and the IWK Research Foundation.
The authors report no conflicts of interest.