Long-term evaluation of genetic counseling following false-positive newborn screen for cystic fibrosis.

Journal of Genetic Counseling
Laura CavanaghP Farrell

Abstract

This cross-sectional mixed method study was a long-term follow-up evaluation of families who participated in an earlier survey of their understanding of cystic fibrosis (CF) genetics and their infants' false-positive CF newborn screening (NBS) results. Thirty-seven of the original 138 parents participated in the follow-up telephone survey. Results showed parents who received genetic counseling at the time of their infants' diagnostic sweat tests had significantly higher long-term retention of genetic knowledge than those without genetic counseling. However, both groups still had misconceptions and lacked accurate information about the actual risk associated with being a CF carrier. Most parents either had already informed (65%) or planned to inform (19%) their children about the child's carrier status. Mean child age at the time of disclosure was 9.2 years. Situational prompts were the most common reasons for informing their children. Neither parental knowledge, medical literacy, nor parental education predicted whether parents informed their children about their carrier status. False-positive NBS results for CF were not associated with parental perceptions of child vulnerability 11-14 years after the testing. Although the samp...Continue Reading

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Citations

Jan 21, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Alison La PeanMichael H Farrell
Oct 3, 2012·International Journal of Nursing Studies·Emma Rowland, Alison Metcalfe
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Feb 9, 2017·Journal of Genetic Counseling·Lisa MadlenskyHeather Zierhut
Sep 25, 2019·Journal of Genetic Counseling·Elinor Langfelder-SchwindRichard B Parad
May 11, 2020·The Journal of Pediatrics·Michael H FarrellPhilip M Farrell
Aug 23, 2020·The Journal of Pediatrics·Michael H FarrellBeth A Tarini
Dec 12, 2018·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Kimberly E FoilDanieli Salinas

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