title: Neurodevelopmental Outcome in High-Risk Congenital Diaphragmatic Hernia Patients: An Appeal for International Standardization.
abstract: BACKGROUND
  Since mortality in congenital diaphragmatic hernia (CDH) is decreasing, morbidity such as neurodevelopmental outcome is becoming increasingly important.
  
  
  OBJECTIVE
  We evaluated neurodevelopmental outcome in high-risk CDH patients treated according to the CDH EURO Consortium standardized treatment protocol.
  
  
  METHODS
  This observational, prospective cohort study was conducted in two European centers. Neurodevelopment of 88 patients (Rotterdam n = 49; Rome n = 39) was assessed at 12 and 24 months with the Bayley Scales of Infant Development (BSID)-II-NL (Rotterdam) or BSID-III (Rome). Data of the centers were analyzed separately.
  
  
  RESULTS
  Cognition was normal in 77.8% of children from Rotterdam and in 94.8% from Rome at 12 months, and in 70.7 and 97.4%, respectively, at 24 months. Motor function was normal in 64.3% from Rotterdam and in 81.6% from Rome at 12 months and in 45.7 and 89.8%, respectively, at 24 months. Longer length of hospital stay (LoS) was associated with worse cognitive outcome and motor function; LoS, low socioeconomic status, and ethnicity were associated with lower cognition.
  
  
  CONCLUSIONS
  At 2 years, most CDH patients have normal cognition, but are at risk for motor function delay. Due to differences in outcomes between centers, careful interpretation is needed before conclusions can be drawn for other centers. Future multicenter collaboration should not only focus on standardization of postnatal care, but also on international standardization of follow-up to identify risk factors and thereby reduce morbidity.
authors.affiliation: Intensive Care and Department of Pediatric Surgery, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
authors.forename: Kitty G
authors.initials: KG
authors.lastname: Snoek
authors.forename: Irma
authors.initials: I
authors.lastname: Capolupo
authors.forename: Annabella
authors.initials: A
authors.lastname: Braguglia
authors.forename: Lucia
authors.initials: L
authors.lastname: Aite
authors.forename: Joost
authors.initials: J
authors.lastname: van Rosmalen
authors.forename: Laura
authors.initials: L
authors.lastname: Valfrè
authors.forename: René M
authors.initials: RM
authors.lastname: Wijnen
authors.forename: Pietro
authors.initials: P
authors.lastname: Bagolan
authors.forename: Dick
authors.initials: D
authors.lastname: Tibboel
authors.forename: Hanneke
authors.initials: H
authors.lastname: IJsselstijn
mesh_terms: D002675:Child, Preschool; D002985:Clinical Protocols / Q000592:standards*; D003071:Cognition; D005260:Female; D005500:Follow-Up Studies; D065630:Hernias, Diaphragmatic, Congenital / Q000150:complications*; D006801:Humans; D007223:Infant; D007558:Italy; D007902:Length of Stay / Q000706:statistics & numerical data; D016014:Linear Models; D008297:Male; D009043:Motor Activity; D015999:Multivariate Analysis; D009426:Netherlands; D065886:Neurodevelopmental Disorders / Q000175:diagnosis* / Q000209:etiology*; D011446:Prospective Studies; D011569:Psychiatric Status Rating Scales; D012307:Risk Factors; D012923:Social Class