Feasibility of biliary atresia newborn screening in an integrated health network.

Publisher: Lippincott Williams & Wilkins Country of Publication: United States NLM ID: 8211545 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1536-4801 (Electronic) Linking ISSN: 02772116 NLM ISO Abbreviation: J Pediatr Gastroenterol Nutr Subsets: MEDLINE

Publication: 1998- : Philadelphia, PA : Lippincott Williams & Wilkins
Original Publication: [New York, N.Y.] : Raven Press, [c1982-

Biliary Atresia*/diagnosis ; Neonatal Screening*/methods ; Feasibility Studies* ; Delivery of Health Care, Integrated*/organization & administration; Humans ; Infant, Newborn ; Female ; Male ; Bilirubin/blood ; Delayed Diagnosis/prevention & control ; Delayed Diagnosis/statistics & numerical data

Diagnostic delay remains a barrier to improving biliary atresia (BA) outcomes. We tested the implementation feasibility of a two stage BA newborn screening program in an integrated healthcare system.
Methods: Under a waiver of consent, we measured direct bilirubin (DB) levels in well newborns undergoing standard of care hyperbilirubinemia screening at four hospitals. Initial DB was measured by modifying nursery admission electronic medical record order sets. Second-stage DB was obtained at ~2 weeks of age under parental permission/informed consent (PP/IC). Implementation measures included the proportions of (1) eligible newborns that were screened before nursery discharge, (2) newborns undergoing second stage screening at ~2 weeks of age, and (3) newborns that underwent clinical evaluation for persistently elevated DB.
Results: A total of 12,276 newborns met eligibility criteria for screening, of which 12,055 (98.2%) underwent first-stage screening in the newborn nursery. Ninety-four (0.78%) had elevated positive initial screens. Ninety newborns (95.7%) underwent second-stage screening (n = 20) or contact was made with the primary care provider to recommend second-stage screening (n = 70). Among all screened newborns, 15 (0.12%) had abnormal second screens. All had follow-up clinical evaluation for potential cholestatic liver disease. No BA cases were identified through screening, though two infants who met exclusion criteria (admission to the newborn intensive care unit) were subsequently diagnosed with BA during the screening period.
Conclusions: BA newborn screening is feasible in an integrated health network. Low consent rates have implications for future studies. Program infrastructure is required for implementation success and sustainability.
(© 2024 The Author(s). Journal of Pediatric Gastroenterology and Nutrition published by Wiley Periodicals LLC on behalf of European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.)

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Intermountain Primary Children's Foundation

Keywords: cholestasis; early diagnosis; integrated delivery of health care

RFM9X3LJ49 (Bilirubin)

Date Created: 20240909 Date Completed: 20241101 Latest Revision: 20241101

20241103

10.1002/jpn3.12367

39248228