My Child Is Islet Autoantibody Positive: Impact on Parental Anxiety

Abstract

OBJECTIVETo assess parent anxiety in response to genetic and islet autoantibody (IA) testing in children at increased genetic risk for type 1 diabetes followed from birth in The Environmental Determinants of Diabetes in the Young (TEDDY) study.RESEARCH DESIGN AND METHODSParent anxiety about TEDDY children’s risk was assessed with the State Anxiety Inventory (SAI). Parents completed the SAI when the child was 3, 6, and 15 months old and annually thereafter. Children were tested for IA every 3 months for 4 years and every 6 months thereafter. Parent SAI scores of 6,799 children followed with IA testing for at least 1 and up to 6 years were examined.RESULTSAt study inception, parents showed high levels of anxiety in response to their child’s increased genetic type 1 diabetes risk; mothers were more anxious than fathers, and parents with diabetes in the family were more anxious than parents with no family history. In response to repeated IA-negative (IA−) test results, parent anxiety declined to normal levels. Anxiety increased in parents faced with an IA-positive (IA+) test result. Parents faced with two or more types of IA+ test results showed particularly high levels of anxiety (all P < 0.001).CONCLUSIONSInfant genetic screening for type 1 diabetes raises parent anxiety when the child is at increased risk, but anxiety dissipates over time in cases of repeated IA− results. IA+ results heighten parent anxiety, and parents faced with two or more types of IA+ results may experience considerable anxiety for longer periods.

Family adjustment to diabetes diagnosis in children: Can participation in a study on type 1 diabetes genetic risk be helpful?

“…Parent diabetes‐specific anxiety as measured by the SAI was high and similar to other reports of parent anxiety at the time of a child's medical diagnosis. Mean SAI scores for mothers of both TEDDY children and community controls in the current study were higher than those in previously published work for mothers and fathers at TEDDY study enrollment when parents are first informed of their child's increased genetic risk for type 1 diabetes and also higher than scores following notification within TEDDY that a child has developed islet autoantibodies . Further, the mean SAI score for both groups was above 40, a score that has been suggested as indicative of high levels of anxiety .…”

“…Of course, most children participating in such studies never develop type 1 diabetes and their psychological welfare is of equal importance. Although not the focus of this study, our previous work suggests that learning that your child is genetically at‐risk for type 1 diabetes increases parental anxiety but this anxiety rather rapidly declines to normal levels . Nevertheless, the psychological well‐being of all participants in screening and monitoring studies of individuals at genetic risk for type 1 diabetes remains a critically important area of inquiry …”

The Environmental Determinants of Diabetes in the Young (TEDDY) Study: 2018 Update

“…TEDDY has sought to determine the cognitive, emotional, and behavioral impact of the study participation on the child and parent [84–87]. Families that experience maladjustment to the stress of a child developing islet autoimmunity are offered professional counseling partially supported by the study.…”

The association between stressful life events and respiratory infections during the first 4 years of life: The Environmental Determinants of Diabetes in the Young study

“…Mothers were asked to respond to each item while thinking specifically about their child's risk for T1D; their six-item score was then converted to a score comparable with that obtained from the full 20-item scale. The scale is highly reliable in the TEDDY population (coefficient α = 0.90; Johnson et al, 2016) and has been used in numerous studies of children or adults at high risk for T1D (Hummel, Ziegler, & Roth, 2004;Johnson, 2011;Johnson, Baughcum, Carmichael, She, & Schatz, 2004;Johnson, Lynch, Roth, Schatz, and the TEDDY Study Group, 2017).…”