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Survival and healthcare utilization of infants diagnosed with lethal congenital malformations

Jacqueline E Nguyen1,2, Jason L Salemi3,4, Jean P Tanner4

  • 1Division of Neonatology, Morsani College of Medicine University of South Florida, Tampa, FL, USA. jnguye31@jhmi.edu.

Journal of Perinatology : Official Journal of the California Perinatal Association
|September 22, 2018
PubMed

Insights

Infants with lethal congenital malformations like trisomy 18 and 13 experienced longer survival, hospital stays, and higher medical costs. These findings aid clinicians in family counseling and care planning.

Area of Science:

  • Perinatal Medicine
  • Medical Genetics
  • Pediatric Health Economics

Background:

  • Lethal congenital malformations significantly impact infant survival, hospital length of stay (LOS), and healthcare costs.
  • Understanding the nuances of care and outcomes for these conditions is crucial for effective clinical management.

Purpose of the Study:

  • To assess survival, hospital LOS, and medical care costs for infants with lethal congenital malformations.
  • To examine the relationship between medical/surgical therapies and survival in this population.

Main Methods:

  • Retrospective cohort study of infants born between 1998-2009 with lethal congenital malformations.
  • Data sourced from a longitudinally linked maternal/infant database.

Main Results:

  • Infants with trisomy 18 (T18), trisomy 13 (T13), bilateral renal agenesis, and skeletal dysplasias demonstrated longer survival rates compared to infants without birth defects.
  • These conditions were also associated with increased inpatient medical costs and longer hospital LOS.
  • The cohort included 786 infants with various conditions, including T18 (n=350), T13 (n=206), anencephaly (n=125), and bilateral renal agenesis (n=53).

Conclusions:

  • Care practices and survival outcomes for infants with T18, T13, bilateral renal agenesis, and skeletal dysplasias have evolved over time.
  • This data provides valuable insights for clinicians counseling families and establishing prenatal and postnatal goals of care.
Abstract

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