Psychological Impact of Screening and Prediction in Type 1 Diabetes

Abstract

Screening programs designed to identify persons at risk for type 1 diabetes via genetic and antibody testing are controversial because they typically target children, provide only a crude estimate of type 1 diabetes risk, and offer no means of preventing the disease. For this reason, genetic and antibody testing for type 1 diabetes risk is usually limited to carefully conducted research studies. The psychological impact of such screening programs include cognitive, emotional, and behavioral sequelae; the available literature has focused primarily on parents, and usually mothers, since the target of screening is usually infants or young children. Diabetes risk is a difficult construct to effectively communicate. Many individuals fail to accurately understand risk; inaccurate risk perceptions may increase over time and have been associated with early study withdrawal. Simply asking study participants if they understand the risk information provided is insufficient. Anxiety and worry are common reactions to learning that you or a loved one is at increased risk for type 1 diabetes. For most people, anxiety and worry dissipate with time but some individuals may be particularly vulnerable to prolonged anxiety or depression. Although there is no known means to prevent type 1 diabetes in at-risk individuals, families often report increased surveillance of those at risk and behavior changes to prevent the disease, potentially threatening the internal validity of the study.

Maternal anxiety about a child's diabetes risk in the TEDDY study: the potential role of life stress, postpartum depression, and risk perception

“…The same factors were associated with increased depressive symptoms in response to risk notification as well . Risk underestimation has been reported in TEDDY and previously in parents of children at increased genetic risk for T1D and appears to increase over time . Although anxiety and depression symptoms are frequently correlated, differential effects of maternal anxiety and depression symptoms in response to infant T1D risk were reported.…”

“…Accurate RP about the child's risk was an independent predictor of maternal anxiety. The differential effects of mother's anxiety and depression symptoms in response to RP as reported earlier could not be observed in TEDDY.…”

“…Maternal anxiety about the child's T1D risk was measured at 6 months by a 6-item scale [State Anxiety Inventory (SAI)] (5,10,(12)(13)(14) adapted from the state component of the STAI (9). Mothers were asked to respond to the SAI while thinking specifically about their baby's risk for T1D and their 6-item scores were converted into total scores comparable to the 20-item scores obtained using the STAI.…”

“…A number of studies used the State-Trait Anxiety Inventory (STAI) (9) to investigate the emotional impact of learning that an individual or their child is at risk for T1D. These studies suggest that anxiety tends to be high in response to the news of increased risk but declines over time (5,(10)(11)(12)(13)(14)(15).…”

Capillary blood islet autoantibody screening for identifying pre-type 1 diabetes in the general population: design and initial results of the Fr1da study

“…Results of the BABYDIAB and TEDDY studies indicate that notification of a positive autoantibody test is associated with increased anxiety in parents that decreases over time (TEDDY unpublished data). [22][23][24][25] We expect training and counselling to reduce psychological stress. The psychological impact, depression, anxiety and burden are monitored using a standardised questionnaire (Patient Health Questionnaire 26 ) given on the diagnosis of pre-type 1 diabetes, and at 6 and 12 months later.…”