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

Stacy K. Carmichael, Suzanne Bennett Johnson, Amy Baughcum, Kerri North, Diane Hopkins, Margaret G. Dukes, Jin-Xiong She, Desmond A. Schatz

Research output: Contribution to journalArticle

35 Scopus citations

Abstract

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, ∼3.6 weeks and ∼3.9 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.

Original languageEnglish (US)
Pages (from-to)77-83
Number of pages7
JournalGenetics in Medicine
Volume5
Issue number2
DOIs
StatePublished - Mar 1 2003

Keywords

  • Genetic screening
  • Newborn
  • Parental understanding
  • Risk communication
  • Type 1 diabetes

ASJC Scopus subject areas

  • Genetics(clinical)

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