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Clinical outcomes in U.S. infants with cystic fibrosis from 2001 to 2012

Heather Hoch1, Marci K Sontag2, Sharon Scarbro3

  • 1Department of Pediatrics, University of Colorado School of Medicine and Children's Hospital Colorado, Aurora, Colorado.

Pediatric Pulmonology
|September 28, 2018
PubMed

Insights

Newborn screening for cystic fibrosis (CF) significantly improved infant growth and reduced infections by 2012. Early detection through newborn screening (NBS) is key for better CF outcomes.

Area of Science:

  • Pediatrics
  • Genetics
  • Public Health

Background:

  • Universal newborn screening (NBS) for cystic fibrosis (CF) was implemented across all 50 U.S. states by 2010.
  • Assessing trends in CF outcomes during the decade of NBS implementation is crucial for understanding its impact.

Purpose of the Study:

  • To evaluate trends in malnutrition, stunting, and infection rates in U.S. infants with CF.
  • To determine the impact of universal newborn screening (NBS) on early CF diagnosis and outcomes.

Main Methods:

  • Utilized data from the CF Foundation Patient Registry (CFFPR) for infants diagnosed with CF between 2001 and 2010.
  • Analyzed diagnostic methods, demographics, growth parameters (weight, length z-scores), and microbiology (Pseudomonas aeruginosa) up to 24 months of age.

Main Results:

  • The percentage of infants diagnosed via NBS increased from 15% (2001) to 83% (2012).
  • Significant improvements were observed in mean weight, length, and weight-for-length z-scores from 2001 to 2012.
  • Decreases were noted in pancreatic enzyme use (94% to 83%) and Pseudomonas aeruginosa culture positivity (27% to 15%).

Conclusions:

  • Nationwide implementation of CF NBS is linked to improved growth and reduced P. aeruginosa infections.
  • Current rates of malnutrition, stunting, and infection highlight areas for targeted early intervention and quality improvement in CF care.
Abstract

Keywords:
Pseudomonas aeruginosaStaphylococcus aureuscystic fibrosismalnutritionnewborn screening

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