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Survival, hospitalisation and surgery in children born with Pierre Robin sequence: a European population-based cohort

Michele Santoro1, Ester Garne2, Alessio Coi3

  • 1Unit of Epidemiology of rare Diseases and Congenital Anomalies, Institute of Clinical Physiology, National Research Council, Pisa, Italy msantoro@ifc.cnr.it.

Archives of Disease in Childhood
|May 9, 2023
PubMed

Insights

Children with Pierre Robin sequence (PRS) have high early mortality and morbidity, with most requiring surgery before age five. Survival rates improve after infancy, with fewer hospitalizations noted between ages five and nine.

Area of Science:

  • Pediatric Health
  • Congenital Anomalies
  • Public Health Surveillance

Background:

  • Pierre Robin sequence (PRS) is a congenital condition affecting craniofacial development.
  • Understanding the long-term outcomes of PRS is crucial for patient care and resource allocation.

Purpose of the Study:

  • To evaluate survival rates, hospitalization patterns, and surgical interventions in children with PRS across Europe.
  • To provide reliable data for families and healthcare providers managing PRS.

Main Methods:

  • A multicentre, population-based cohort study utilizing data from 12 EUROCAT congenital anomaly registries.
  • Electronic linkage of PRS birth data (1995-2014) with mortality, hospitalization, and surgical procedure data up to 10 years of age.
  • Standardized data analysis using common data models and pooled results via random-effect meta-analyses.

Main Results:

  • Survival to age 10 was 95.1%. The majority of deaths occurred within the first year of life.
  • Nearly all children (99.2%) were hospitalized in the first year, with a median stay of 21.4 days; 67.6% underwent surgery.
  • By age five, 99.2% had undergone a median of two surgeries. Hospitalizations decreased after age five.

Conclusions:

  • Children with PRS experience significant early-life morbidity, including high rates of hospitalization and surgery.
  • Survival improves post-infancy, with a notable reduction in hospitalizations after age five.
  • This study offers essential, reliable estimates on PRS survival and morbidity for clinical and familial guidance.
Abstract

Keywords:
Child HealthEpidemiologyMortality

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