The Environmental Determinants of Diabetes in the Young (TEDDY) is an international study of 8,676 children from birth to age 15 at increased genetic risk for type 1 diabetes. Before the 10-year study visit, children received a book explaining their increased genetic risk for type 1 diabetes and TEDDY study aims. We compared children who read the book to those who did not read the book on their (1) type 1 diabetes risk perception accuracy, (2) anxiety about their increased risk for type 1 diabetes (using a modified version of Spielberg State Anxiety Inventory for children), (3) actions intended to prevent diabetes, and (4) study satisfaction. Overall, 2064/3306 (62%) children read the book; girls, children from two parent families, and Swedish and Finnish children (all p<0.001) were more likely to read the book. Using generalized linear modeling we examined differences in those who read versus did not read the book on child outcome measures while controlling for demographic (e.g., parent education, first-degree relative with diabetes, child sex) and parent measures (e.g., parent risk perception, anxiety, study satisfaction). Children who read the book had more accurate risk perception (read book = 30% accurate versus 24% accurate; OR=1.41, 95% CI=1.19-1.68, p<0.001) and greater TEDDY study satisfaction measured on a 0-2 scale (average treatment difference = 0.10, 95% CI=0.07-0.13, p<0.001) compared to those who did not read the book. No significant group differences in anxiety or behaviors to prevent diabetes occurred.
In conclusion, the use of an educational tool is well accepted, is not related to increased child anxiety about diabetes, and is related to greater child diabetes risk perception accuracy and study satisfaction. However, even after reading the book, 70% of children had inaccurate diabetes risk perception, suggesting additional strategies are needed. Findings have implications for retention and education in long-term research cohorts.
L.B. Smith: None. R. Tamura: None. R. Karban: None. J. Melin: None. Å.E. Wimar: None. M. Gardiner: None. K.A. Driscoll: None.
National Institute of Diabetes and Digestive and Kidney Diseases; National Institute of Allergy and Infectious Diseases; Eunice Kennedy Shriver National Institute of Child Health and Human Development; National Institute of Environmental Health Sciences; Centers for Disease Control and Prevention; JDRF; National Institutes of Health/National Center for Advancing Translational Sciences (UL1TR000064, UL1TR001082)