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Synopsis report from the pilot USA Kernicterus Registry

Journal of Perinatology volume 29, pages S4–S7 (2009)Cite this article

Abstract

Breakdown in systems for safe newborn health-care delivery accounts for the majority of kernicterus cases encountered in the United States. Traditional epidemiologic investigations do not track the national incidence of severe hyperbilirubinemia and kernicterus or recognize its recent surge. Innovative investigative strategies are needed to seek more sensitive surrogates for kernicterus (often diagnosed late in infancy) and to overcome the limitations of retrospective continuity of adverse neonatal experiences because of severe hyperbilirubinemia. Root cause analysis of a cohort of infants who manifested kernicterus in the past two decades attests to some of the clinical and health-service barriers encountered by families as they negotiate health care from multiple providers at multiple sites during the first week after birth. Clinicians, health-care organizations, parents, and payors and purchasers of health care were often unaware of the ongoing patterns of care that may have obstructed preventive care. Now, partly based on these analyses, key recommendations have led to clinical usable guidelines for practitioners and have contributed to systems-oriented national guidelines for evidence-based safer management of newborn jaundice.1 Clinician- and family-oriented tool kits have been made available, based on the report presented in this study, to facilitate effective implementation and thus optimize and institutionalize these guidelines (http://www.cdc.gov/jaundice). An informed partnership of parents and clinicians seems to be the most effective strategy to prevent severe neonatal hyperbilirubinemia and ‘near-miss’ cases of kernicterus in the United States.

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Authors and Affiliations

  1. Division of Neonatal and Developmental Medicine, Department of Pediatrics, Stanford University School of Medicine and Lucile Packard Children's Hospital, Stanford, CA, USA

    V K Bhutani

  2. Pennsylvania Center for Kernicterus, Philadelphia, PA, USA

    L Johnson

Authors
  1. V K Bhutani
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  2. L Johnson
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Correspondence to V K Bhutani.

Additional information

A report from the Pilot USA Kernicterus Registry (Initiated by Audrey K Brown and Lois Johnson on behalf of the Kernicterus Symposium, Pediatric Academic Societies)Project title: Kernicterus Research and PreventionProject number: AAMC/CDC: MM-04880Institution name: Stanford University School of Medicine and University of PennsylvaniaProject Director: Vinod K Bhutani, MD, FAAP; E-mail: bhutani@stanford.eduCo-investigator: Lois Johnson, MD, FAAPInstitutions Consultants and collaboratorsStanford University David K Stevenson, MD, FAAP  Ronald J Wong  Judith Y Hall, RN  Karen Karp, RN, Emedio M SivieriUniversity of Pennsylvania  Rosemary Dworanczyck, Chris Dalin  Nancy Kennedy and Ann Schwoebel, MSNPICK (Parents of Infants and Children with Kernicterus) Sue Sheridan, Karen Dixon and all parents of children with kernicterusAmerican Academy of Pediatrics (Chair, Subcommittee for Hyperbilirubinemia)  M Jeffrey Maisels, MD, FAAPp4ps (Partnership for Patient Safety)  Marty J HatlieUniversity of Minnesota  Glenn R Gourley, MDMedical College of Virginia Steven M Shapiro, MDEmory University  Augusto Sola, MD, FAAPUniversity of New Mexico  Ronald L PolandBrown University  William J Cashore, MD, FAAPShaare-Zadek Hospital, Jerusalem  Michael KaplanUniversity of Washington  Richard P WennbergUniversity of Michigan  Steven M Donn, MD, FAAPAmerican Academy of Pediatrics (Quality Improvement Innovation Network)  Carol M Lannon  Ann R StarkPediatric Academic Societies  Members of the Bilirubin ClubInvited Institutional Members of Kernicterus Prevention Partnership Consortium (KPPC) led by the CDC (Drs Marshalyn Yeargin-Allsop and Rachel Avchen)AcknowledgementsThe study for this research was also supported in part by funds from the Sandy Eglin Fund and her generous support of the Pilot USA Kernicterus Registry at Pennsylvania Hospital, Philadelphia. We remember late Audrey K Brown, MD, and value her immeasurable contributions to the initiation and maintenance of the Pilot USA Kernicterus Registry. We thank the parents logged on the newborn jaundice list-serve and our colleagues who contributed their experiences to the registry. We express our gratitude to the newborn jaundice team at the Pennsylvania Hospital and Stanford University for their dedication and support. We also appreciate the administrative support of Donna Spitz (Philadelphia) and Stella Dina- Gengania (Stanford). This study was also supported in part by AAMC/CDC PERT Grant MM-0448.

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Bhutani, V., Johnson, L. Synopsis report from the pilot USA Kernicterus Registry. J Perinatol 29 (Suppl 1), S4–S7 (2009). https://doi.org/10.1038/jp.2008.210

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