Literature DB >> 20171652

Psychological effects of false-positive results in cystic fibrosis newborn screening: a two-year follow-up.

Julie Beucher1, Emmanuelle Leray, Eric Deneuville, Monique Roblin, Isabelle Pin, François Bremont, Dominique Turck, Jean-Louis Giniès, Pascal Foucaud, Gilles Rault, Jocelyne Derelle, Valérie David, Hubert Journel, Sophie Marchand, David Veillard, Michel Roussey.   

Abstract

OBJECTIVE: To evaluate parental stress after a false-positive result at the time of the cystic fibrosis (CF) newborn screening (NBS), attributable to heterozygotism or persistent hypertrypsinemia. STUDY
DESIGN: A prospective study was conducted in 86 French families at 3, 12, and 24 months after NBS. A psychologist conducted interviews with a questionnaire, the Perceived Stress Scale, and the Vulnerable Child Scale.
RESULTS: Overall, 96.5% of parents said they had been anxious at the time of the sweat test. However, 86% felt entirely reassured 3 months after the test. The mean Perceived Stress Scale score did not differ from that observed in the French population. Mean Vulnerable Child Scale scores were high, associated with a low Parental Perception of Child Vulnerability. These results did not differ significantly at 1 and 2 years. In total, 86% to 100% of families no longer worried about CF. All parents stated that they would have the test performed again for another child.
CONCLUSIONS: CF NBS can lead to false-positive results, causing parental anxiety, which quickly decreases after a sweat test performed soon after the phone call.

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Year:  2010        PMID: 20171652     DOI: 10.1016/j.jpeds.2009.12.003

Source DB:  PubMed          Journal:  J Pediatr        ISSN: 0022-3476            Impact factor:   4.406


  18 in total

1.  In reply.

Authors:  Jürg Barben
Journal:  Dtsch Arztebl Int       Date:  2013-10       Impact factor: 5.594

2.  Psychosocial Distress and Knowledge Deficiencies in Parents of Children in Ireland Who Carry an Altered Cystic Fibrosis Gene.

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5.  Factors that influence parents' experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy.

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6.  Assessment of Parental Understanding of Positive Newborn Screening Results and Carrier Status for Cystic Fibrosis with the use of a Short Educational Video.

Authors:  R Temme; A Gruber; M Johnson; L Read; Y Lu; J McNamara
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8.  Psychosocial impact on mothers receiving expanded newborn screening results.

Authors:  Kathleen O'Connor; Tara Jukes; Sharan Goobie; Jennifer DiRaimo; Greg Moran; Beth Katherine Potter; Pranesh Chakraborty; Charles Anthony Rupar; Srinitya Gannavarapu; Chitra Prasad
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9.  Newborn screening for cystic fibrosis: Role of primary care providers in caring for infants with positive screening results.

Authors:  June C Carroll; Robin Z Hayeems; Fiona A Miller; Carolyn J Barg; Yvonne Bombard; Pranesh Chakraborty; Beth K Potter; Jessica Peace Bytautas; Karen Tam; Louise Taylor; Elizabeth Kerr; Christine Davies; Jennifer Milburn; Felix Ratjen; Astrid Guttmann
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10.  Informing parents about positive newborn screen results: parents' recommendations.

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