Severe neurodevelopmental disability and healthcare needs among survivors of medical and surgical necrotizing enterocolitis: A prospective cohort study

      Abstract

      Purpose

      This study characterizes neurodevelopmental outcomes and healthcare needs of extremely low birth weight (ELBW) survivors of necrotizing enterocolitis (NEC) compared to ELBW infants without NEC.

      Methods

      Data were collected prospectively on neonates born 22–27 weeks’ gestation or 401–1000 g at 47 Vermont Oxford Network member centers from 1999 to 2012. Detailed neurodevelopmental evaluations were conducted at 18–24 months corrected age. Information regarding rehospitalizations, postdischarge surgeries, and feeding was also collected. “Severe neurodevelopmental disability” was defined as: bilateral blindness, hearing impairment requiring amplification, inability to walk 10 steps with support, cerebral palsy, and/or Bayley Mental or Psychomotor Developmental Index <70. Diagnosis of NEC required both clinical and radiographic findings.

      Results

      There were 9063 children without NEC, 417 with medical NEC, and 449 with surgical NEC evaluated. Significantly higher rates of morbidity were observed among infants with a history of NEC. Those with surgical NEC were more frequently affected across all outcome measures at 18–24 months corrected age: 38% demonstrated severe neurodevelopmental disability, nearly half underwent postdischarge operations, and a quarter required tube feeding at home.

      Conclusion

      At 18–24 months, extremely low birth weight survivors of necrotizing enterocolitis were at markedly increased risk (p < 0.001) for severe neurodevelopmental disability, postdischarge surgery, and tube feeding.

      Level of evidence

      II (prospective cohort study with <80% follow-up rate).

      Key words

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      References

        • Fitzgibbons S.C.
        • Ching Y.
        • Yu D.
        • et al.
        Mortality of necrotizing enterocolitis expressed by birth weight categories.
        J Pediatr Surg. 2009; 44 ([discussion 5-6]): 1072-1075
        • Hull M.A.
        • Fisher J.G.
        • Gutierrez I.M.
        • et al.
        Mortality and management of surgical necrotizing enterocolitis in very low birth weight neonates: a prospective cohort study.
        J Am Coll Surg. 2014; 218: 1148-1155
        • Mercier C.E.
        • Dunn M.S.
        • Ferrelli K.R.
        • et al.
        Neurodevelopmental outcome of extremely low birth weight infants from the Vermont Oxford network: 1998–2003.
        Neonatology. 2010; 97: 329-338
        • Schmidt B.
        • Asztalos E.V.
        • Roberts R.S.
        • et al.
        Impact of bronchopulmonary dysplasia, brain injury, and severe retinopathy on the outcome of extremely low-birth-weight infants at 18 months: results from the trial of indomethacin prophylaxis in preterms.
        JAMA. 2003; 289: 1124-1129
      1. Manual of operations: part 2 data definitions & infant data forms. 18.0. 18.0 ed. Vermont Oxford Network, Burlington, VT2013
      2. Vermont Oxford network extremely low birth weight infant follow-up project manual of operations, version 17. Vermont Oxford Network, 2015
        • Janvier A.
        • Barrington K.
        • Farlow B.
        Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology.
        Semin Perinatol. 2014; 38: 38-46
        • Kaempf J.W.
        • Tomlinson M.W.
        • Campbell B.
        • et al.
        Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes.
        Pediatrics. 2009; 123: 1509-1515
        • Stoll B.J.
        • Hansen N.I.
        • Bell E.F.
        • et al.
        Trends in care practices, morbidity, and mortality of extremely preterm neonates, 1993-2012.
        JAMA. 2015; 314: 1039-1051
        • Bell E.F.
        • Strauss R.G.
        • Widness J.A.
        • et al.
        Randomized trial of liberal versus restrictive guidelines for red blood cell transfusion in preterm infants.
        Pediatrics. 2005; 115: 1685-1691
        • Kirpalani H.
        • Whyte R.K.
        • Andersen C.
        • et al.
        The Premature Infants in Need of Transfusion (PINT) study: a randomized, controlled trial of a restrictive (low) versus liberal (high) transfusion threshold for extremely low birth weight infants.
        J Pediatr. 2006; 149: 301-307
        • Sparger K.A.
        • Assmann S.F.
        • Granger S.
        • et al.
        Platelet transfusion practices among very-low-birth-weight infants.
        JAMA Pediatr. 2016; 170: 687-694
        • Aker J.
        • Block R.I.
        • Biddle C.
        Anesthesia and the developing brain.
        AANA J. 2015; 83: 139-147
        • Davidson A.J.
        • Disma N.
        • de Graaff J.C.
        • et al.
        Neurodevelopmental outcome at 2 years of age after general anaesthesia and awake-regional anaesthesia in infancy (GAS): an international multicentre, randomised controlled trial.
        Lancet. 2016; 387: 239-250
        • Zimmerman E.
        • Lahav A.
        Ototoxicity in preterm infants: effects of genetics, aminoglycosides, and loud environmental noise.
        J Perinatol. 2013; 33: 3-8
        • Stoll B.J.
        • Hansen N.I.
        • Adams-Chapman I.
        • et al.
        Neurodevelopmental and growth impairment among extremely low-birth-weight infants with neonatal infection.
        JAMA. 2004; 292: 2357-2365
        • Chan S.H.
        • Johnson M.J.
        • Leaf A.A.
        • et al.
        Nutrition and neurodevelopmental outcomes in preterm infants: a systematic review.
        Acta Paediatr. 2016; 105: 587-599
        • Linsell L.
        • Malouf R.
        • Morris J.
        • et al.
        Prognostic factors for cerebral palsy and motor impairment in children born very preterm or very low birthweight: a systematic review.
        Dev Med Child Neurol. 2016; 58: 554-569
        • Linsell L.
        • Malouf R.
        • Morris J.
        • et al.
        Prognostic factors for poor cognitive development in children born very preterm or with very low birth weight: a systematic review.
        JAMA Pediatr. 2015; 169: 1162-1172
        • Brumberg H.L.
        • Shah S.I.
        Born early and born poor: an eco-bio-developmental model for poverty and preterm birth.
        J Neonatal Perinatal Med. 2015; 8: 179-187
        • Kowlessar N.M.
        • Jiang H.J.
        • Steiner C.
        Hospital stays for newborns, 2011: statistical brief #163.
        in: Healthcare Cost and Utilization Project (HCUP) statistical briefs. Rockville (MD). 2006
        • Johnson T.J.
        • Patel A.L.
        • Jegier B.J.
        • et al.
        Cost of morbidities in very low birth weight infants.
        J Pediatr. 2013; 162 ([e1]): 243-249
        • Heyman M.B.
        • Harmatz P.
        • Acree M.
        • et al.
        Economic and psychologic costs for maternal caregivers of gastrostomy-dependent children.
        J Pediatr. 2004; 145: 511-516
        • Kuo D.Z.
        • Cohen E.
        • Agrawal R.
        • et al.
        A national profile of caregiver challenges among more medically complex children with special health care needs.
        Arch Pediatr Adolesc Med. 2011; 165: 1020-1026
        • Behrman R.E.
        • Butler A.S.
        • Institute of Medicine (U.S.). Committee on Understanding Premature Birth and Assuring Healthy Outcomes
        Preterm birth : causes, consequences, and prevention.
        National Academies Press, Washington, D.C.2007
        • Pakarinen M.P.
        • Kurvinen A.
        • Koivusalo A.I.
        • et al.
        Long-term controlled outcomes after autologous intestinal reconstruction surgery in treatment of severe short bowel syndrome.
        J Pediatr Surg. 2013; 48: 339-344
        • DeNavas-Walt C.
        • Proctor B.D.
        • Smith J.C.
        U.S. Census Bureau. Income, poverty, and health insurance coverage in the United States.
        in: Washington. United States Census Bureau, D.C.2012: 2013
        • Guillen U.
        • DeMauro S.
        • Ma L.
        • et al.
        Relationship between attrition and neurodevelopmental impairment rates in extremely preterm infants at 18 to 24 months: a systematic review.
        Arch Pediatr Adolesc Med. 2012; 166: 178-184
        • Hamilton B.E.
        • Martin J.A.
        • Osterman M.J.
        • et al.
        Births: final data for 2014.
        Natl Vital Stat Rep. 2015; 64: 1-64
        • Wadhawan R.
        • Oh W.
        • Hintz S.R.
        • et al.
        Neurodevelopmental outcomes of extremely low birth weight infants with spontaneous intestinal perforation or surgical necrotizing enterocolitis.
        J Perinatol. 2014; 34: 64-70
        • Spencer-Smith M.M.
        • Spittle A.J.
        • Lee K.J.
        • et al.
        Bayley-III cognitive and language scales in preterm children.
        Pediatrics. 2015; 135: e1258-65
        • Moore T.
        • Johnson S.
        • Haider S.
        • et al.
        Relationship between test scores using the second and third editions of the Bayley scales in extremely preterm children.
        J Pediatr. 2012; 160: 553-558