Child and mother study satisfaction in a longitudinal study of children at-risk for type 1 diabetes

BACKGROUND: Child study satisfaction has rarely been assessed in longitudinal pediatric research. This study examined child and maternal study satisfaction among 10-15-year-old participants in The Environmental Determinants of Diabetes in the Young (TEDDY) study, an observational multinational (US, Finland, Germany, and Sweden) study of children at increased genetic risk for type 1 diabetes enrolled at birth. METHODS: Child and maternal study satisfaction was measured by a 3-item annual questionnaire from child-age 10 years until the last visit at child-age 15. Generalized estimating equations identified sociodemographic and study-related variables associated with study satisfaction. RESULTS: Children and mothers exhibited high study satisfaction across all ages although their study satisfaction scores were weakly correlated (r ≥ 0.20, p < 0.001). Factors associated with higher study satisfaction were similar for children and mothers: living in the US compared to Finland (Finnish children: -0.78 95%CI -0.86, -0.69; Finnish mothers: -1.48 95%CI -1.61, -1.35; p < 0.001), older child age (15-year-old vs 10-year-old child: 0.09 95%CI 0.03,0.14; mother: 0.42 95%CI 0.37, 0.47; p < 0.001), and accurate perception about the child's type 1 diabetes risk (child: 0.20 95%CI 0.15,0.25; mothers: 0.20 95%CI 0.13, 0.22; p < 0.001). Additional factors associated with greater child study satisfaction included female sex (-0.29 95%CI -0.35, -0.24; p < 0.001), being multiple islet autoantibody positive (0.21 95%CI 0.11, 0.32; p < 0.001), lower child anxiety about type 1 diabetes risk (-0.01 95%CI -0.02, -0.01; p < 0.001), having a mother with higher study satisfaction (0.13 95%CI 0.12, 0.15; p < 0.001), and having read an age-appropriate book about the study, its purpose, and type 1 diabetes (0.19 95%CI 0.12, 0.25; p < 0.001). CONCLUSIONS: Study satisfaction was high among 10-15-year-old children at increased genetic risk for type 1 diabetes, and their mothers, who had participated in a longitudinal observational study since the child's birth. Factors associated with satisfaction were similar for children and their mothers. Potentially modifiable factors that could be targeted to improve study satisfaction include mother and child accuracy about the child's type 1 diabetes risk and for child study satisfaction in particular - the child's own anxiety about type 1 diabetes, the child's mother's satisfaction and having the child read high quality age-appropriate materials about the study. TRIAL REGISTRATION: NCT00279318, 06/09/2004.