National Institute of Child Health and Human Development (NICHD) conference on kernicterus: a population perspective on prevention of kernicterus.

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.