Long-term Quality of Life in Neonatal Surgical Patients
Ruchi Amin*1, Michelle Knezevich*2, Melissa Lingogo*2, Casey M. Calkins*1, Thomas T. Sato*1, Keith T. Oldham1, Marjorie J Arca1
1Medical College of Wisconsin, Milwaukee, WI;2Children's Hospital of Wisconsin, Milwaukee, WI
Quality of life in neonatal surgical patients is seldom explored in a longitudinal manner. This prospective observational study was designed to assess Pediatric Quality of Life (PedsQL) scores in patients with diaphragmatic hernia (CDH), esophageal atresia/tracheoesophageal fistula (EA/TEF), Hirschsprung disease (HD), gastroschisis (GAS), omphalocele (OMP), and necrotizing enterocolitis (NEC). We hypothesize physical and psychosocial scores will improve with age for all patients except in NEC due to its association with prematurity.
Data were collected from 248 patients [CDH=53; EA/TEF=62; HD=46; GAS=37; OMP=27; NEC=23] from 2012-2017. Aggregate physical, psychosocial, and overall PedsQL scores were plotted for each diagnosis. Spline regression models were created to model scores against age.
Using graphs created with best-of-fit modeling, physical scores trended up for all diagnoses except CDH and NEC beyond age 10. Psychosocial and overall scores also trended up for all diagnoses except NEC beyond age 10. Beyond age 12, CDH, GAS, and HD patients had mean overall scores within the normal range, while NEC, OMP, and TEF had scores similar to children with chronic illnesses (Figure 1).
There is variation in long-term outcomes after neonatal surgery. Quality of life is significantly impaired in NEC, moderately impaired in OMP and TEF, and within normal range for CDH survivors, HD, and GAS patients at the population level. These data are unique and relevant to perioperative family discussions.
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