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Anxiety and Risk Perception in Parents of Children Identified by Population Screening as High Risk for Type 1
Holly K O'Donnell1, Cristy Geno Rasmussen1, Fran Dong1
1Department of Pediatrics, Barbara Davis Center for Diabetes, University of Colorado School of Medicine, Aurora, CO.
Insights
Parents of children with islet autoantibodies experience high anxiety about type 1 diabetes (T1D) risk. Communicating this risk effectively remains a challenge, impacting parental perception and anxiety levels.
Area of Science:
- Endocrinology
- Pediatric Diabetes
- Psychological Impact of Chronic Disease
Background:
- Type 1 diabetes (T1D) risk is indicated by islet autoantibodies.
- Early screening and monitoring programs aim to prevent diabetic ketoacidosis at diagnosis.
- Parental anxiety and risk perception are crucial factors in managing at-risk children.
Purpose of the Study:
- To evaluate anxiety levels in parents of children screening positive for islet autoantibodies.
- To assess parental perception of their child's risk for developing type 1 diabetes.
- To understand the challenges in communicating T1D risk to families.
Main Methods:
- The Autoimmunity Screening for Kids (ASK) study enrolled 280 children (age 1-17) with confirmed islet autoantibodies.
- Parents completed anxiety (State Anxiety Inventory - SAI) and risk perception questionnaires during monitoring visits.
- Data were collected at initial follow-up (visit 1) and a subsequent visit (visit 2).
Main Results:
- Mean parental anxiety (SAI 46.1 ± 11.2) was elevated above the clinical cutoff at visit 1 and remained high at visit 2.
- Nearly half (48.9%) of parents perceived their child at increased risk for T1D at visit 1.
- Higher risk perception was associated with multiple autoantibodies and a family history of T1D.
Conclusions:
- Elevated parental anxiety is common in families with children at high risk for T1D.
- Effectively conveying T1D risk to parents is challenging, leading to varied risk perceptions.
- Addressing parental anxiety and improving risk communication are essential in T1D prevention programs.
Objective:
To assess anxiety and risk perception among parents whose children screened positive for islet autoantibodies, indicating elevated risk for type 1 diabetes (T1D).
Research Design And Methods:
The Autoimmunity Screening for Kids (ASK) study identified 319 children age 1 to 17 years at risk for T1D via screening for islet autoantibodies; 280 children with confirmed islet autoantibodies and their caregivers enrolled in a follow-up education and monitoring program to prevent diabetic ketoacidosis at diagnosis. Parents completed questionnaires at each monitoring visit, including a 6-item version of the State Anxiety Inventory (SAI), to assess anxiety about their child developing T1D, and a single question to assess risk perception.
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 T1D at the initial follow-up monitoring visit (visit 1). Parents of children with more than one islet autoantibody and a first-degree relative with T1D 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 T1D. Information about the risk of developing T1D is difficult to convey, as evidenced by the wide range of risk perception reported in this sample.
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