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Kernicterus: Epidemiological Strategies for Its Prevention through Systems-Based Approaches

Journal of Perinatology volume 24, pages 650–662 (2004)Cite this article

Abstract

Kernicterus, thought to be due to severe hyperbilirubinemia, is an uncommon disorder with tragic consequences, especially when it affects healthy term and near-term infants. Early identification, prevention and treatment of severe hyperbilirubinemia should make kernicterus a preventable disease. However, national epidemiologic data are needed to monitor any preventive strategies. Recommendations are provided to obtain prospective data on the prevalence and incidence of severe hyperbilirubinemia and associate mortality and neurologic injury using standardized definitions, explore the clinical characteristics and root causes of kernicterus in children identified in the Kernicterus Pilot Registry, identify and test an indicator for population surveillance, validating systems-based approaches to the management of newborn jaundice, and explore the feasibility of using biologic or genetic markers to identify infants at risk for hyperbilirubinemia. Increased knowledge about the incidence and consequences of severe hyperbilirubinemia is essential to the planning, implementation and assessment of interventions to ensure that infants discharged as healthy from their birth hospitals have a safer transition to home, avoiding morbidity due to hyperbilirubinemia and other disorders.

At a recent NIHCD-sponsored conference, key questions were raised about kernicterus and the need for additional strategies for its prevention. These questions and an approach to their answers form the basis of this report.

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Author information

Authors and Affiliations

  1. Department of Pediatrics, University of Pennsylvania, Philadelphia, PA, USA

    Vinod K Bhutani MD, FAAP

  2. Pennsylvania Hospital, University of Pennsylvania, Philadelphia, PA, USA

    Lois H Johnson MD, FAAP

  3. William Beaumont Hospital, Royal Oak, MI, USA

    M Jeffrey Maisels MB, BCh, FAAP

  4. Departments of Epidemiology and Biostatistics and Pediatrics, University of California, San Francisco, CA, USA

    Thomas B Newman MD, MPH

  5. Department of Health Research and Policy, Health Economics Resource Center, Veterans Affairs Palo Alto Health Care System, and Center for Primary Care and Outcomes Research, Stanford University School of Medicine, Stanford, USA

    Ciaran Phibbs PhD

  6. Department of Newborn Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA

    Ann R Stark MD, FAAP

  7. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA

    Marshalyn Yeargin-Allsopp MD, APP

Authors
  1. Vinod K Bhutani MD, FAAP
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  2. Lois H Johnson MD, FAAP
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  3. M Jeffrey Maisels MB, BCh, FAAP
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  4. Thomas B Newman MD, MPH
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  5. Ciaran Phibbs PhD
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  6. Ann R Stark MD, FAAP
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  7. Marshalyn Yeargin-Allsopp MD, APP
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Additional information

Presented in part at the NICHD Conference, Research on Prevention of Bilirubin-Induced Brain Injury and Kernicterus-From Bench to Bedside, at Bethesda, Md, USA, June 2003.

APPENDIX A

APPENDIX A

Table A1 summarizes the data from Pilot Kernicterus Registry.

Table a1 Clinical Characteristics of 125 from 142 Infants with Kernicterus Discharged as Healthy (Pilot Kernicterus Registry)
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Bhutani, V., Johnson, L., Jeffrey Maisels, M. et al. Kernicterus: Epidemiological Strategies for Its Prevention through Systems-Based Approaches. J Perinatol 24, 650–662 (2004). https://doi.org/10.1038/sj.jp.7211152

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