A prospective, national observational study to determine the incidence, presentation, current management strategies and outcomes for Necrotising Enterocolitis (NEC) in the UK and Ireland at one year after diagnosis.
To determine the number of infants who received surgical management following a diagnosis of NEC over a 12 month period.
To describe the surgical management of these infants and describe their outcomes to discharge.
To describe 1-year clinical outcomes (survival, cause of death, intestinal failure, duration of parenteral nutrition, length of stay in hospital, liver disease associated with intestinal failure, further surgery, time to establish full enteral feeding) for all infants who have received surgical management for NEC.
March 2013 - February 2014
NEC is a serious intestinal inflammatory disease involving bacterial invasion and systemic infection that predominantly, although not exclusively, affects preterm neonates. Estimates of incidence, mortality and long-term outcomes are important for monitoring the burden of disease and temporal trends, allocating resources and counselling parents. There is a suggestion that NEC-related mortality may be higher in the UK in comparison to the US. However, accurate estimation of NEC incidence and long-term outcomes remain difficult because of variations in the case-definitions used in studies, lack of follow-up data, and difficulties in clearly defining the at-risk, denominator population because of complex referral and transfer patterns. In addition to high mortality, survivors are at considerable risk of long-term neurodisability, PN-related cholestasis liver disease, liver failure, stricture formation and short bowel syndrome. Recent data from the National Confidential Enquiry into Patient Outcome and Death (NCEPOD), suggest that there is delay in surgical intervention in approximately 9% of cases, highlighting the difficulties in decision making with respect to surgical intervention. The report recommended collection of data nationally to facilitate both medical and surgical management of NEC.
No large scale population-based follow-up study for surgical outcomes of NEC has been conducted to date.
All infants with suspected NEC where a decision for surgery was made, irrespective of whether surgery was performed.
All infants subsequently found to have Spontaneous Intestinal Perforation (SIP).
All infants where the final diagnosis is NOT NEC or SIP, e.g. volvulus
NEC is defined using the following criteria diagnosed at surgery, at postmortem examination or clinically and radiographically:
At least one of the following clinical signs present:
Bilious gastric aspirate or emesis
Occult or gross blood in stool (no fissure)
At least one of the following radiographic findings present:
SIP is defined as infants who satisfy the definition of NEC above but are found to have a single perforation at surgery or post-mortem.
The study has been approved by the NRES Committee South Central-Oxford A (Ref: 12/SC/0416).
Ms Kokila Lakhoo and Dr Amit Gupta, John Radcliffe Hospital, Oxford.
PLEASE NOTE: The data collection form is for your information only. Please DO NOT use it to report a case or to provide us with information on a case you have reported. If you have reported a case to us, a form with the BAPS-CASS Case ID written on it will be sent to you. If you wish to report a case, or require an additional form please contact us. Thank you.
^Salvia G, et al. Neonatal Onset Intestinal Failure: An Italian Multicenter Study. Journal of Pediatrics 2008;153(5):674-76.e2.
^Sonntag J, et al. Growth and neurodevelopmental outcome of very low birthweight infants with necrotizing enterocolitis. Acta Paediatr 2000;89(5):528-32.
^Rees CM, Pierro A, Eaton S. Neurodevelopmental outcomes of neonates with medically and surgically treated necrotizing enterocolitis. Arch Dis Child Fetal Neonatal Ed 2007;92(3):F193-8.
^Simon NP. Follow-up for infants with necrotizing enterocolitis. Clin Perinatol 1994;21(2):411-24.
^Butter A, Flageole H, Laberge JM. The changing face of surgical indications for necrotizing enterocolitis. J Pediatr Surg 2002;37(3):496-9.
^Ricketts RR. Surgical treatment of necrotizing enterocolitis and the short bowel syndrome. Clin Perinatol 1994;21(2):365-87.
^Are We There Yet? A review of organisational and clinical aspects of children's surgery. London: National Confidential Enquiry into Patient Outcome and Death, 2011.