Psychological impact of childhood islet autoantibody testing in families participating in the BABYDIAB study

Aim: To determine anxiety in parents of children undergoing testing for islet autoantibodies. Subjects and methods: Children of parents with Type 1 diabetes (T1DM) were tested at birth, age 9 months, 2 years and 5 years for islet autoantibodies. Families were informed about islet autoantibody status in the child after each visit. The psychological impact of islet autoantibody testing was assessed in parents before and after the 5 years visit. Anxiety was measured using a subscale of the State-Trait-Anxiety Inventory (STAI) and structured single-item questions. Four hundred and sixty-three parents were evaluated before blood drawing and 317 parents at notification of islet autoantibody status. Results: Before blood withdrawal, anxiety was increased in mothers and in particular in mothers of islet autoantibody-positive offspring compared with a normative control group. At notification of islet antibody status, anxiety significantly decreased in parents of islet autoantibody- negative offspring, and increased in parents of islet autoantibody-positive offspring. Blood withdrawal was considered a burden for parents and offspring (15% and 48%, respectively). Most parents from islet autoantibody-negative and -positive offspring wished to know the diabetes risk of their child (95% and 100%, respectively) and were glad to be informed about their child's islet antibody status (97% and 87%). Conclusions: Overall, islet autoantibody testing in early childhood reduces anxiety in T1DM families. The increased anxiety associated with islet autoantibody-positive status suggests, however, that testing should be performed in centres which can provide accurate risk information and counselling if required.