Anxiety and Risk Perception in Parents of Children Identified by Population Screening as High-Risk for Type 1 Diabetes

Objective: To assess anxiety and risk perception among parents whose child screened positive for islet autoantibodies, indicating elevated risk for type 1 diabetes.

Research Design and Methods: The Autoimmunity Screening for Kids (ASK) study identified 319 children ages 1-17 years at risk for type 1 diabetes via screening for islet autoantibodies; 280 children with confirmed islet autoantibodies and their caregiver(s) enrolled in a follow-up education and monitoring program to prevent diabetic ketoacidosis at diagnosis. Parents completed questionnaires, including a 6-item version of the State Anxiety Inventory (SAI) to assess anxiety about their child developing type 1 diabetes, and a single question to assess risk perception at each monitoring visit.

Results: At the first ASK follow-up monitoring visit, mean parental anxiety was elevated above the clinical cutoff of 40 (SAI: 46.1±11.2). At the second follow-up monitoring visit (i.e., Visit 2), mean anxiety remained elevated but started to trend down. Approximately half (48.9%) of parents reported their child was at increased risk for type 1 diabetes at the initial follow-up monitoring visit (Visit 1). Parents of children with a first-degree relative with type 1 diabetes were more likely to report their child was at increased risk.

Conclusions: Most parents of autoantibody positive children have high anxiety about their child developing type 1 diabetes. Information about risk of developing type 1 diabetes is difficult to convey as evidenced by the wide range of risk perception reported in this sample.