Prospective assessment in newborns of diabetes autoimmunity (PANDA): Maternal understanding of infant diabetes risk

Purpose: To assess accuracy of mothers' understanding of their newborns' genetic risk for type 1 diabetes and to identify predictors of the comprehension and retention of genetic information. Methods: Mothers of 435 newborns genetically screened at birth were informed of the infant's risk for type 1 diabetes using a standard script that provided both categorical and numerical risk information. The mothers' comprehension and retention of this information were assessed by structured interview on two occasions, similar to3.6 weeks and similar to3.9 months postnotification. Results: At the initial interview, 73.1% of mothers gave a correct estimate of their child's genetic risk, 3.2% overestimated risk, 13.3% underestimated risk, and 10.3% could not recall risk at all. At the follow-up interview, fewer mothers (61.9%) correctly estimated their child's risk and more mothers (24.4%) underestimated their child's risk. Maternal accuracy was associated with maternal education, ethnic minority status, infant risk status, maternal ability to spontaneously recall both categorical and numerical risk estimates, and length of time since risk notification. Underestimation of risk was associated with maternal education, family history of diabetes, time since risk notification, and maternal anxiety about the baby's risk. Conclusion: The accuracy of mothers' recall of infant risk declines over time, with an increasing number of mothers underestimating the infant's risk. Effective risk communication strategies need to be developed and incorporated into genetic screening programs.