Skip to main content
SpringerLink
Log in

A review of the psychosocial effects of false-positive results on parents and current communication practices in newborn screening

  • Original Article
  • Published:
Journal of Inherited Metabolic Disease

Summary

As more states adopt expanded newborn screening for metabolic disorders, the overall number of false positives increases. False-positive screening results have been associated with increased anxiety and stress in parents of infants who require follow-up testing, even after the infant’s good health is confirmed. This article reviews the literature on the negative impact of false-positive newborn screening results on parents, along with a review of current communication practices for follow-up screening. The results of this review suggest that parental stress and anxiety can be reduced with improved education and communication to parents, specifically at the time of follow-up screening. Communication strategies with sample materials are proposed.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Abbreviations

CES-D:

Center for Epidemiologic Studies Depression Scales

MAACL:

Mean Multiple Affect Adjective Checklist

MS/MS:

tandem mass spectrometry

NBS:

newborn screening

P-CDI:

Parent–Child Dysfunction Interaction

PCP:

primary care provider

PSI:

Parenting Stress Index

References

  • Abidin RR (1995) Parenting Stress Index, 3rd Edition: Professional Manual. Odessa, FL: Psychological Assessment Resources, Inc.

    Google Scholar 

  • AAP: American Academy of Pediatrics (2000) Newborn Screening Task Force, serving the family from birth to the medical home & newborn screening: A blueprint for the future: A call for a national agenda on state newborn screening programs. Pediatrics. 106: 386–427.

    Google Scholar 

  • American College of Obstetricians and Gynecologists (ACOG) and The American Academy of Pediatrics (AAP) (2006) These tests could save your baby’s life. Newborn screening tests. www.medicalhomeinfo.org/screening/newborn.html (Accessed 09/03/2006).

  • Baroni MA, Anderson YE, Mischler E (1997) Cystic fibrosis newborn screening: impact of early screening results on parenting stress. Pediatr Nurs 23: 143–151.

    PubMed  CAS  Google Scholar 

  • Bodegard G, Fyro K, Larsson A (1983) Psychological reactions in 102 families with a newborn who has a falsely positive screening test for congenital hypothyroidism. Acta Paediatr Scand Suppl 304: 1–21.

    Article  PubMed  CAS  Google Scholar 

  • Center for Disease Control and Prevention (2003) National Vital Statistics Reports 52: 1–114.

    Google Scholar 

  • Children’s Hospital Boston (2005a) Follow-up to Newborn Screening: A Guide for Parents. A pamphlet for parents. Boston, MA. http://www.childrenshospital.org/newenglandconsortium/nbs_brochure.pdf (Accessed 09/02/2006).

  • Children’s Hospital Boston (2005b). Notifying parents about the need for follow-up testing for metabolic disorder. A Q&A sheet for pediatricians. Boston, MA. http://www.childrenshospital.org/newenglandconsortium/faqsheet.pdf (Accessed 20/05/2006).

  • Ciske DJ, Haavisto A, Laxova A, Rock LZM, Farrell PM (2001) Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process. Pediatrics 107: 699–705.

    Article  PubMed  CAS  Google Scholar 

  • Clemens CJ, Davis SA, Bailey AR (2000) The false-positive in universal newborn hearing screening. Pediatrics 106: e7.

    Article  PubMed  CAS  Google Scholar 

  • Essex MJ, Klein MH, Cho E, Kalin NH (2002) Maternal stress beginning in infancy may sensitize children to later stress exposure: effects on cortisol and behavior. Biol Psychiatry 52: 776–784.

    Article  PubMed  CAS  Google Scholar 

  • Fant KE, Clark SJ, Kemper AR (2005) Completeness and complexity of information available to parents from newborn–screening programs. Pediatrics 115: 1268–1272.

    Article  PubMed  Google Scholar 

  • Fyro K, Bodegard G (1987) Four-year follow-up of psychological reactions to false positive screening tests for congenital hypothyroidism. Acta Paediatr Scand 76: 107–114.

    PubMed  CAS  Google Scholar 

  • Gennaccaro M, Waisbren SE, Marsden D (2005) The knowledge gap in expanded newborn screening: survey results from paediatricians in Massachusetts. J Inherit Metab Dis 28: 819–824.

    Article  PubMed  CAS  Google Scholar 

  • Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS (2004) Psychological aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess 8: 33.

    Google Scholar 

  • Gurian EA, Kinnamon DD, Henry JJ, Waisbren SE (2006) Expanded newborn screening for biochemical disorders: the effect of a false-positive result. Pediatrics 117: 1915–1921.

    Article  PubMed  Google Scholar 

  • Hiller EH, Landenburger G (1997) Public participation in medical policy-making and the status of consumer autonomy: the example of newborn screening programs in the United States. Am J Pub Health 87: 1280–1288.

    Article  PubMed  CAS  Google Scholar 

  • Kemper AR, Fant KE, Clark SJ (2005) Informing parents about newborn screening. Public Health Nurs 22: 332–338.

    Article  PubMed  Google Scholar 

  • Kim S, Lloyd-Puryear MA, Tonniges TF (2003) Examination of the communication practices between newborn screening programs and the medical home. Pediatrics 111: 120–126.

    Article  Google Scholar 

  • Kwon C, Farrell PM (2000) The magnitude and challenge of false-positive newborn screening test results. Arch Pediatr Adolesc Med 154: 714–718.

    PubMed  CAS  Google Scholar 

  • Levy HL, Albers S (2000) Genetic screening of newborns. Annu Rev Genomics Hum Genet 1: 139–177.

    Article  PubMed  CAS  Google Scholar 

  • McLaughlin G (1969) SMOG grading: A new readability formula. J Reading 12: 639–646.

    Google Scholar 

  • Rhode Island Department of Health (2005) Newborn Screening and Services: A guide to test results, programs, and follow-up for your baby. Providence, RI: Rhode Island Department of Health.

  • Rothenberg MB, Sills EM (1968) Iatrogenesis: the PKU anxiety syndrome. J Am Acad Child Psychiatry 7: 689–692.

    PubMed  CAS  Google Scholar 

  • Schulze A, Lindner M, Kohlmuller D, Olgemoller K, Mayatepek E, Hoffmann GF (2003) Expanded newborn screening for inborn errors of metabolism by electrospray ionization-tandem mass spectrometry: results, outcome, and implications. Pediatrics 111: 1399–1406.

    Article  PubMed  Google Scholar 

  • Sorenson JR, Levy H, Mangione TW, Sepe SJ (1984) Parental response to repeat testing of infants with ‘false positive’ results in a newborn screening program. Pediatrics 73: 183–187.

    PubMed  CAS  Google Scholar 

  • Stuart A, Moretz M, Yang EY (2000) An investigation of maternal stress after neonatal hearing screening. Am J Audiol 9: 135–141.

    Article  PubMed  CAS  Google Scholar 

  • Thomason M, Lord J, Bain MD, et al (1998) A systematic review of evidence for the appropriateness of neonatal screening programmes for inborn errors of metabolism. J Public Health Med 20: 331–343.

    PubMed  CAS  Google Scholar 

  • Tluczek A, Mischler EH, Bowers B, et al (1991) Psychological impact of false-positive results when screening for cystic fibrosis. Pediatr Pulmonol Suppl 7: 29–37.

    PubMed  CAS  Google Scholar 

  • Tluczek A, Koscik RL, Farrell PM, Rock MJ (2005) Psychosocial risk associated with newborn screening for cystic fibrosis: parents’ experience while awaiting the sweat-test appointment. Pediatrics 115: 1692–1703.

    Article  PubMed  Google Scholar 

  • US General Accounting Office (2003) Newborn screening: characteristics of state programs. 28–34. http://www.gao.gov/new.items/d03449.pdf (Accessed 03/01/06).

  • Waisbren SE, Albers S, Amato S, et al (2003) Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress. JAMA 290: 2564–2572.

    Article  PubMed  CAS  Google Scholar 

  • Zuckerman M, Rubin B (1965) Manual for the Multiple Affect Adjective Checklist. San Diego, CA: Educational and Industrial Testing Service.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Division of Genetics, Children’s Hospital Boston, Massachusetts, USA

    J. Hewlett

  2. Department of Psychiatry, Division of Psychology, Children’s Hospital Boston, and Harvard Medical School, Massachusetts, USA

    S. E. Waisbren

Authors
  1. J. Hewlett
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. S. E. Waisbren
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to J. Hewlett.

Additional information

Communicating editor: Georg Hoffmann

Competing interests: None declared

Rights and permissions

Reprints and permissions

About this article

Cite this article

Hewlett, J., Waisbren, S.E. A review of the psychosocial effects of false-positive results on parents and current communication practices in newborn screening. J Inherit Metab Dis 29, 677–682 (2006). https://doi.org/10.1007/s10545-006-0381-1

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10545-006-0381-1

Keywords

Search

Navigation