• It is challenging for people to understand their risk (or their child’s risk) for developing a disease like T1D.
   

• Individuals from racial and ethnic minority backgrounds and fathers
  (in comparison to mothers) are
  more likely to underestimate risk.
   

• It is important to repeatedly review risk with families to maintain accurate understanding over time.
   

• Accurate understanding is critical for appropriate monitoring behaviors and preparation for eventual symptomatic Stage 3 T1D. 
   

• Underestimating risk is associated with increased likelihood of withdrawal from monitoring.(1-3)
   

Parents of children WITH increased genetic risk (family history, genetic risk markers) experience anxiety regarding risk of developing T1D:

• At high levels after learning their child is at increased genetic risk for T1D, but anxiety declines over time if there are no positive islet autoantibody tests.

• If their child develops multiple positive islet autoantibodies, anxiety increases and this anxiety remains high over
  time.(4)
   

Parents of children WITHOUT known genetic risk:

• Most (70%) are anxious after learning their child has tested positive for one or more antibodies. We do not yet know how this may change over time.(5)
   

Children old enough to report their own anxiety about T1D:

• Report elevated levels of anxiety as well (36-70%), depending on factors such as age and risk category.
   

• Although families are told there is no proven behavior intervention to modify risk of T1D, many people will engage
  in behaviors to try to prevent T1D after learning they (or their child) are at increased risk.
   

• It is important to monitor for behavior changes, especially diet changes
  (e.g., very low carbohydrate diet) as these can have adverse effects when taken to extremes.