The Journal of Pediatrics
Volume 156, Issue 5 , Pages 771-776.e1 , May 2010

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

  • Julie Beucher, JD

      Affiliations

    • CF Center University Hospital, Rennes, France
    • ,
  • Emmanuelle Leray, MD

      Affiliations

    • Public Health Department, University Hospital, Rennes, France
    • ,
  • Eric Deneuville, MD

      Affiliations

    • CF Center University Hospital, Rennes, France
    • ,
  • Monique Roblin

      Affiliations

    • CF Center University Hospital, Rennes, France
    • ,
  • Isabelle Pin, MD

      Affiliations

    • CF Center Grenoble, Grenoble, France
    • ,
  • François Bremont, MD

      Affiliations

    • CF Center Toulouse, Toulouse, France
    • ,
  • Dominique Turck, MD

      Affiliations

    • CF Center Lille, Lille, France
    • ,
  • Jean-Louis Giniès, MD

      Affiliations

    • CF Center Angers, Angers, France
    • ,
  • Pascal Foucaud, MD

      Affiliations

    • CF Center Versailles, Versailles, France
    • ,
  • Gilles Rault, MD

      Affiliations

    • CF Center Roscoff, Roscoff, France
    • ,
  • Jocelyne Derelle, MD

      Affiliations

    • CF Center Nancy, Nancy, France
    • ,
  • Valérie David, MD

      Affiliations

    • CF Center Nantes, Nantes, France
    • ,
  • Hubert Journel, MD

      Affiliations

    • CF Center Vannes, Vannes, France
    • ,
  • Sophie Marchand, MD

      Affiliations

    • CF Center Tours, Tours, France
    • ,
  • David Veillard, MD

      Affiliations

    • Public Health Department, University Hospital, Rennes, France
    • ,
  • Michel Roussey, MD

      Affiliations

    • CF Center University Hospital, Rennes, France
    • Corresponding Author InformationReprint requests: Pr Michel Roussey, CHU Hôpital Sud, 16 Boulevard Bulgarie, 35000 Rennes, France.

Received 14 April 2009 ,Revised 28 August 2009 ,Accepted 2 December 2009.

References 

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  2. Munck A, Dhondt JL, Sahler C, Roussey M. Implementation of the French nationwide cystic fibrosis newborn screening program. J Pediatr. 2008;153:228–233
  3. Gibson LE, Cooke RE. A test for concentration of electrolytes in sweat in cystic fibrosis of the pancreas utilizing pilocarpine by iontophoresis. Pediatrics. 1959;23:545–549
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  14. Sorenson JR, Levy HL, Mangione TW, Sepe SJ. Parental response to repeat testing of infants with “false-positive” results in a newborn screening program. Pediatrics. 1984;73:183–187
  15. Hewlett J, Waisbren SE. A review of the psychosocial effects of false-positive results on parents and current communication practices in newborn screening. J Inherit Metab Dis. 2006;29:677–682
  16. Merelle ME, Schouten JP, Gerritsen J, Dankert-Roelse JE. Influence of neonatal screening and centralized treatment on long-term clinical outcome and survival of CF patients. Eur Respir J. 2001;18:306–315
  17. Young SS, Kharrazi M, Pearl M, Cunningham G. Cystic fibrosis screening in newborns: results from existing programs. Curr Opin Pulm Med. 2001;7:427–433
  18. Tluczek A, Koscik RL, Farrell PM, Rock MJ. Psychosocial risk associated with newborn screening for cystic fibrosis: parents’ experience while awaiting the sweat-test appointment. Pediatrics. 2005;115:1692–1703
  19. Rothenberg MB, Sills EM. Iatrogenesis: the PKU anxiety syndrome. J Am Acad Child Psychiatry. 1968;7:689–692
  20. Parsons EP, Clarke AJ, Bradley DM. Implications of carrier identification in newborn screening for cystic fibrosis. Arch Dis Child Fetal Neonatal Ed. 2003;88:F467–F471
  21. Clemens CJ, Davis SA, Bailey AR. The false-positive in universal newborn hearing screening. Pediatrics. 2000;106:E7
  22. Tluczek A, Mischler EH, Farrell PM, Fost N, Peterson NM, Carey P, et al. Parents’ knowledge of neonatal screening and response to false-positive cystic fibrosis testing. J Dev Behav Pediatr. 1992;13:181–186
  23. Mischler EH, Wilfond BS, Fost N, Laxova A, Reiser C, Sauer CM, et al. Cystic fibrosis newborn screening: impact on reproductive behavior and implications for genetic counseling. Pediatrics. 1998;102:44–52
  24. Parsons EP, Bradley DM. Psychosocial issues in newborn screening for cystic fibrosis. Paediatr Respir Rev. 2003;4:285–292

 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.

PII: S0022-3476(09)01226-8

doi: 10.1016/j.jpeds.2009.12.003

The Journal of Pediatrics
Volume 156, Issue 5 , Pages 771-776.e1 , May 2010

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