Parental anxiety after 5 years of participation in a longitudinal study of children at high risk of type 1 diabetes

Aim: Parents of children participating in screening studies may experience increased levels of anxiety. The aim of this study was to assess parental anxiety levels after 5 years of participation in the Diabetes Prediction in Skåne study. Associations between parental anxiety about their child developing type 1 diabetes and clinical, demographic, and immunological factors were analyzed. Method: Mothers and fathers of participating 5-year-old children answered a questionnaire regarding parental anxiety associated with their child's increased risk of type 1 diabetes. Anxiety levels were assessed using the State Anxiety Inventory scale. Data were analyzed using logistic and multinomial regression. Results: Parents of 2088 5-year-old children participated. Both parents answered the questionnaire for 91.2% (n = 1904) of children. In 67.1% of families, neither parent reported being anxious that their child had an increased risk of developing type 1 diabetes. Anxiety was higher in mothers of children positive for autoantibodies (OR 2.21 95% CI 1.41, 3.48, P <.001) and those perceiving their child had a higher risk for type 1 diabetes (2.01; 1.29, 3.13, P =.002). Frequency of worry was associated with parental anxiety (mothers 5.33; 3.48, 8.17, P <.001, fathers 5.27; 3.51, 7.92, P <.001). Having a family member with type 1 diabetes and having lower education level were also associated with increased anxiety. Conclusions: Diabetes in the family, the child's autoantibody status, education level, frequency of worry and risk perception where associated with higher parental anxiety. These findings add to our understanding of the impact of screening for type 1 diabetes in children on parental anxiety