Abstract
Introduction: To investigate parental type 1 diabetes-related anxiety in response to genetic screening at birth and islet autoantibody test results in at-risk children participating in the prevention study Primary Oral Insulin Trial (POInT). Methods: Children were screened at birth for genetic risk for type 1 diabetes and enrolled between 4-7 months of age in the POInT study. Parental anxiety regarding their child’s risk of type 1 diabetes was measured by the State Anxiety Inventory (SAI) at 8-11, 18, and 36 months of age. Blood samples were analyzed for islet autoantibodies at each visit and results and information on risk of type 1 diabetes was communicated to the parents. Linear regression was used to investigate factors associated with anxiety. Results: Type 1 diabetes related anxiety was considered high among 58.5% of the mothers and 41.9% for the fathers when the child was between 8-11 months old, regardless of autoantibody status. Mean anxiety scores decreased over time among parents of children with negative autoantibody status. Receiving information about their child’s positive islet autoantibody status increased parental anxiety and their anxiety scores remained high over time. Anxiety was also found to be associated with country of residence, having a first degree relative with type 1 diabetes, and parental study satisfaction for both mothers and fathers at all time-points. First degree relatives were more anxious than those from the general population and parents more satisfied with participation in the study were less anxious. Parents from Poland and Belgium were more anxious than parents from Germany and Sweden. Conclusion: Type 1 diabetes related anxiety is common among parents participating in genetic screening at birth and receiving information on high genetic risk after screening at birth, declining over time. Information on islet autoantibody positivity increases type 1 diabetes related anxiety. Having a first degree relative and being a mother increase the risk of anxiety, while fathers and parents satisfied with participation are less anxious. These findings emphasize the importance of close follow-up and individualized support of families with a child at high genetic risk for type 1 diabetes.