Distinguished Research Professor Suzanne Bennett Johnson Florida State University College of Medicine

Psychological Impact of Pediatric General Population Screening to Identify Children At-risk for Type 1 Diabetes: Lessons Learned from the TEDDY Study

Type 1 diabetes (T1D) is an autoimmune disease in which the pancreatic beta cells are destroyed; exogenous insulin replacement by injection or via an insulin pump is necessary for survival. The autoimmune process begins well before clinical diagnosis and can be detected by the presence of islet autoantibodies (IA) in the blood. This has led to screening programs to identify those at risk for the disease. These screening programs are controversial because (1) currently there is no means to prevent T1D, (2) screening programs are often carried out with children who do not have the cognitive capacity to make their own decision about participation, and (3) the time between developing IA and progressing to clinical diagnosis of T1D is highly variable and may be many years away. Nevertheless, screening programs of this type are increasing, raising concerns about their psychological impact on participants. The Environmental Determinants of Diabetes in the Young (TEDDY) is an international (Germany, Finland, Sweden, US) effort to identify triggers of T1D in children at high genetic risk for this disease. At risk children are identified at birth and followed until development of T1D or age 15 years. The TEDDY protocol involves annual psychosocial assessments of parents and starting at age 10, of the children themselves. Consequently, TEDDY provides important information about the psychological impact of T1D related screening programs. This presentation will discuss the psychosocial impact data gleaned from the TEDDY study, highlighting why this information is important and what gaps in our knowledge remain.