medwireNews: Many parents underestimate their child’s risk for type 1 diabetes, and although accuracy improves following a positive autoantibody result, it subsequently declines with time, a survey of TEDDY participants shows.
This highlights a need to develop “improved methods to communicate type 1 diabetes risk information, especially to less educated parents with no familiarity of type 1 diabetes,” said Suzanne Bennett Johnson, from Florida State University College of Medicine in Gainesville, USA at the ADA’s 78th Scientific Sessions in Orlando, Florida, USA.
The TEDDY (The Environmental Determinants of Diabetes in the Young) study includes 8676 children from four countries who were born with high-risk HLA-DR/DQ genotypes or had a first-degree relative (FDR) with diabetes.
Parents were informed of their child’s increased risk for diabetes at study enrollment, shortly after birth, and completed surveys assessing their perception of risk at 6 and 15 months and annually thereafter.
After each islet antibody (IA) test (every 3–6 months) the parents were informed of the impact that result has on future diabetes risk, ie the risk is unchanged following a negative result, slightly increased following a first positive result, and further increased following single or multiple persistent positive results.
Bennett Johnson and team found that, with consistently negative IA results, approximately 80-90% of Moms from FDR families accurately described their child’s level of risk for type 1 diabetes as somewhat higher or much higher than that of other children. The accuracy level was 60-80% among FDR Dads, and around 60% and 50% in general population (no family history of diabetes) Moms and Dads, respectively.
Of note, the level of accuracy fell over the course of 5 years among the FDR parents, but remained stable among those from the general population.
At the time of a first positive IA test result, approximately 40% of Moms and 35% of Dads who previously said their child had an equal or lower risk for diabetes than other children accurately reported their child’s risk as elevated. More highly educated parents were more likely to correct their perception of accuracy than less educated parents.
The study also showed that the number of positive IA test results affected accuracy perception. The degree of accuracy fell with time in the cases of a single persistent or nonpersistent positive result, but remained stable, and at a higher level, when there were multiple positive IA results.
Bennett Johnson concluded that “despite extensive educational efforts in TEDDY, many parents underestimate their child’s risk. This is particularly true for general population families and for families with a lower education.”
She called for future studies “that might elucidate factors that underline the decline in risk perception accuracy among FDR parents faced with repeated IA negative results or among parents of single IA positive test results.”
Two ideas Bennett Johnson would like to pursue are false reassurance, whereby repeated negative results lead people to believe that risk is declining when it is not, and the possibility that a desire to reduce anxiety causes parents to underestimate their child’s risk.
By Laura Cowen
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