1. ¹The Center for Quality of Care Research and Education, Harvard School of Public Health, Boston, MA, USA
2. ²Pediatric Generalist Research Group, Division of General Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, PA
3. ³Department of Pediatrics, The Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, PA, USA
4. ⁴William Beaumont Hospital, Royal Oak, MI, USA
5. ⁵National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA

Correspondence: R Heather Palmer, MB BCh, SM, Center for Quality of Care Research and Education, 677 Huntington Ave Boston, MA 02115, USA.

Abstract

This paper reviews barriers to the prevention of kernicterus. Reports of kernicterus cases persist. We do not know why kernicterus continues to occur or how best to prevent it. We need evidence for key recommendations that make clinical guidelines usable by practitioners caring for newborns, especially for practitioners providing ambulatory care in the first week of life. Data on prevalence and incidence, mortality and morbidity are essential for launching a kernicterus public health campaign. Modeling cost-effectiveness requires data on costs and benefits of alternative strategies for managing hyperbilirubinemia and preventing kernicterus and on parental preferences concerning follow-up in the first days of life. Understanding how existing patterns of care obstruct preventive care involves exploration of the roles of clinicians, health-care organizations, parents, and payers and purchasers of health care. Lastly, discovering how to motivate change in existing practices can provide the guidance needed to prevent kernicterus in the US.