Psychological Effects of False-Positive Results in Cystic Fibrosis Newborn Screening: A Two-Year Follow-Up - 07/03/14

Doi : 10.1016/j.jpeds.2009.12.003

Julie Beucher, JD ^a, Emmanuelle Leray, MD ^b, Eric Deneuville, MD ^a, Monique Roblin ^a, Isabelle Pin, MD ^c, François Bremont, MD ^d, Dominique Turck, MD ^e, Jean-Louis Giniès, MD ^f, Pascal Foucaud, MD ^g, Gilles Rault, MD ^h, Jocelyne Derelle, MD ⁱ, Valérie David, MD ^j, Hubert Journel, MD ^k, Sophie Marchand, MD ^l, David Veillard, MD ^b, Michel Roussey, MD ^a,^⁎
^a CF Center University Hospital, Rennes, France
^b Public Health Department, University Hospital, Rennes, France
^c CF Center Grenoble, Grenoble, France
^d CF Center Toulouse, Toulouse, France
^e CF Center Lille, Lille, France
^f CF Center Angers, Angers, France
^g CF Center Versailles, Versailles, France
^h CF Center Roscoff, Roscoff, France
ⁱ CF Center Nancy, Nancy, France
^j CF Center Nantes, Nantes, France
^k CF Center Vannes, Vannes, France
^l CF Center Tours, Tours, France

Reprint requests: Pr Michel Roussey, CHU Hôpital Sud, 16 Boulevard Bulgarie, 35000 Rennes, France.

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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Mots-clés : CF, CFTR, CRCM, HZ, IRT, NBS, PHT, PPCV, PSS, VCS

Plan

Supported by grants from the Programme Hospitalier de Recherche Clinique and the association for Vaincre La Mucoviscidose, which have subsidized the psychologists and the computerization of the data. The authors declare no conflicts of interest.

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Vol 156 - N° 5

P. 771 - mai 2010 Retour au numéro

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Psychological Effects of False-Positive Results in Cystic Fibrosis Newborn Screening: A Two-Year Follow-Up - 07/03/14

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