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Long-term Quality of Life in Neonatal Surgical Disease

Ruchi Amin1, Michelle Knezevich1, Melissa Lingongo1

  • 1Children's Hospital of Wisconsin and Division of Pediatric Surgery, Department of Surgery, Medical College of Wisconsin, Milwaukee, WI.

Annals of Surgery
|July 12, 2018
PubMed

Insights

Pediatric Quality of Life (PedsQL) scores vary after neonatal surgery for complex conditions. While some diagnoses show normal PedsQL by age 12, others like necrotizing enterocolitis (NEC) indicate impaired quality of life.

Area of Science:

  • Pediatric Surgery
  • Neonatal Care
  • Quality of Life Research

Background:

  • Improved neonatal and surgical care increase survival for newborns with complex conditions.
  • Longitudinal quality of life (QoL) data for these patients are limited.
  • Hypothesized age-dependent improvements in QoL, with variations based on diagnosis.

Purpose of the Study:

  • To assess Pediatric Quality of Life (PedsQL) in children post-surgical treatment for congenital diaphragmatic hernia (CDH), esophageal atresia/tracheoesophageal fistula (EA/TEF), Hirschsprung disease (HD), gastroschisis (GAS), omphalocele (OMP), and necrotizing enterocolitis (NEC).

Main Methods:

  • Prospective observational study of 241 patients (2012-2017).
  • Collected data from an institutional Clinical Outcomes Registry (COR).
  • Utilized spline regression models to analyze PedsQL scores (physical, psychosocial, overall) as a function of age for each diagnosis.

Main Results:

  • Physical and psychosocial scores generally improved with age, with exceptions noted for CDH, NEC, and EA/TEF beyond age 10.
  • By age 12, patients with CDH, GAS, and HD showed overall PedsQL scores within the normal range.
  • NEC, OMP, and EA/TEF patients exhibited PedsQL scores comparable to children with chronic medical conditions beyond age 12.

Conclusions:

  • Significant long-term variation in PedsQL exists after neonatal surgery for complex congenital anomalies.
  • Quality of life is notably impaired in NEC, moderately in OMP and EA/TEF, and normal in CDH, HD, and GAS patients post-age 12.
  • Findings are crucial for prenatal and perioperative counseling of families.
Abstract

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