title: Parental Estimation of Their Child's Increased Type 1 Diabetes Risk During the First 2 Years of Participation in an International Observational Study: Results From the TEDDY study.
abstract: This study assessed mothers' and fathers' perception of their child's risk of getting type 1 diabetes (T1D) during the first 2 years of their participation in The Environmental Determinants of Diabetes in the Young (TEDDY) study. TEDDY parents were informed of their child's increased genetic risk for T1D at study inception. Parent perception of the child's risk was assessed at 3, 6, 15, and 27 months of age. In families with no history of T1D, underestimation of the child's T1D risk was common in mothers (>38%) and more so in fathers (>50%). The analyses indicated that parental education, country of residence, family history of T1D, household crowding, ethnic minority status, and beliefs that the child's T1D risk can be reduced were factors associated with parental risk perception accuracy. Even when given extensive information about their child's T1D risk, parents often fail to accurately grasp the information provided. This is particularly true for fathers, families from low socioeconomic backgrounds, and those with no family history of T1D. It is important to develop improved tools for risk communication tailored to individual family needs.
authors.affiliation: Lund University, Sweden Skåne University Hospital, Lund, Sweden ulrica.swartling@med.lu.se.
authors.forename: Ulrica
authors.initials: U
authors.lastname: Swartling
authors.affiliation: University of South Florida, Tampa, USA.
authors.forename: Kristian
authors.initials: K
authors.lastname: Lynch
authors.affiliation: University of South Florida, Tampa, USA.
authors.forename: Laura
authors.initials: L
authors.lastname: Smith
authors.affiliation: Florida State University College of Medicine, Tallahassee, USA.
authors.forename: Suzanne Bennett
authors.initials: SB
authors.lastname: Johnson
mesh_terms: D000328:Adult; D002675:Child, Preschool; D003922:Diabetes Mellitus, Type 1 / Q000235:genetics / Q000517:prevention & control; D030881:Disclosure; D004522:Educational Status; D005006:Ethnicity; D005191:Family Characteristics; D005220:Fathers; D005260:Female; D020022:Genetic Predisposition to Disease; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D008297:Male; D008913:Minority Groups; D009035:Mothers; D010290:Parents; D010353:Patient Education as Topic; D018570:Risk Assessment
keywords: children; informed consent; risk perception; screening; type 1 diabetes