539-P: Parental Anxiety and Accuracy of Risk Perception upon Receipt of Positive Results of Screening for Presymptomatic Type 1 Diabetes: Autoimmunity Screening for Kids (ASK)

Screening for islet autoantibodies (IAb) followed by education and monitoring of children at high risk for type 1 diabetes (T1D) substantially reduces incidence of diabetic ketoacidosis at diagnosis. We assess parental anxiety and accuracy of risk perception as part of ASK screening, education and monitoring program.

The 10-y risk of clinical diabetes is 70% in children positive for multiple IAb, 50% with single high-affinity, and 2% with single low-affinity (confirmed twice). As of March 2020, ASK had screened for IAb 23,847 general population children and further monitored 280, including 136 with 50-70% high risk and 144 with 2% lower risk; 9% had a first degree relative (FDR) with T1D. At each visit, parental risk perception and anxiety were assessed using the State Anxiety Inventory (SAI), with a score >40 denoting elevated anxiety. Reported here are results from the 1^st visit (N=280) and for those with a 2^nd visit (N=119).

At the 1^st visit, parental anxiety was elevated (mean SAI=46.1) with no difference by child’s risk status, family history, or by which parent responded. SAI was significantly higher in ethnic minorities than in non-Hispanic whites (p<0.0001). Anxiety decreased between the 1^st and 2^nd education and monitoring visit from a mean of 46.1 to 43.8 (p=0.024), most notably in parents of high risk children (44.9 to 42.7 p=0.009) and FDRs (44.6 to 38.6, p=0.059).

Accuracy of risk perception was low at 49% and did not improve at the 2^nd visit. FDR compared to non-FDR (83% vs. 46%, p=0.004) and parents of high risk compared to low risk children had a more accurate risk perception (61% vs. 37% p <0.0001).

Parental anxiety after learning of a child’s positive screening result decreased rapidly in families enrolled in monitoring. However, accurate perception of T1D risk appears less malleable during the initial 3-6 months of the monitoring. Tailored intervention for parents with inaccurate risk perception may be warranted.