OBJECTIVE To describe the psychological impact of positive islet cell antibody (ICA) screening results in children and adults, as well as their parents and spouses.

RESEARCH DESIGN AND METHODS The psychological impact of ICA screening results was assessed subsequent to subjects' being informed of ICA-positive (ICA⁺) status and was re-evaluated 4 months later. Impact was measured using the state subscale of the State-Trait Anxiety Inventory (STAI) for adults or the State-Trait Anxiety Inventory for Children (STAIC), as well as structured interviews. A total of 34 ICA⁺ children, 34 ICA⁺ adults, 33 parents, and 25 spouses were evaluated.

RESULTS At initial notification of ICA⁺ status, clinically and statistically significant anxiety was observed in ICA⁺ children and adults and their family members (P < 0.001). Parents of ICA⁺ children were more anxious than spouses of ICA⁺ adults (P < 0.05). Child and parent anxiety were significantly correlated (P < 0.05); more-anxious children lived with more-anxious parents. No significant association was found between ICA⁺ adults' initial anxiety and their spouses' anxiety. For ICA⁺ participants and their family members, anxiety dissipated to normal levels in 4 months (P < 0.02). ICA⁺ children were less likely than parents to believe they would ever develop insulin-dependent diabetes mellitus (IDDM). Nevertheless, 52% of ICA⁺ children and 24% of ICA⁺ adults endorsed lifestyle or behavior changes as a result of their ICA⁺ status. Behavior change was associated with greater initial anxiety in both children and adults (P < 0.05 for both).

CONCLUSIONS These data suggest that notification of ICA⁺ status has both emotional and behavioral impact. Initial notification of ICA⁺ status is associated with considerable anxiety in both ICA⁺ individuals and their family members. In most cases, this initial anxiety appears to dissipate to normal levels over time. However, many ICA⁺ individuals report initiating lifestyle or health behavior changes in an effort to delay or prevent IDDM onset.