Psychological Impact of Screening for Risk of Type 1 Diabetes: an Update

Summarize recent literature on: understanding of and emotional reactions to type 1 diabetes (T1D) risk; willingness to be screened; behavioral responses to T1D-risk screening results; and provider attitudes/concerns about general population screening.

Difficulty understanding what it means to be at increased risk for T1D is common; anxiety about increased risk may occur, particularly in multiple islet autoantibody positive (IA+) individuals. Many are hesitant to be screened or to be medically monitored if at increased risk. Those at risk may engage in behaviors to try to prevent T1D. Providers are often cautious about general population screening, with concerns about associated anxiety paramount. Understanding the psychosocial implications of T1D-risk screening is critical to its success. Interventions are needed to improve understanding of the purpose, procedures and consequences of screening, what it means to be at risk, and ways to cope with associated anxiety. The psychosocial impact of a Stage 1 or Stage 2 T1D diagnosis needs clarification and the availability of drugs to delay disease onset is likely to have a significant impact on the decision to be screened and monitored if at-risk for T1D. The impact of screening on children as well as their role in screening/medical monitoring decision-making needs to be addressed.