NETS¹ᴳ - Gastroschisis

Results

The outcomes to form the NETS¹ᴳ core outcome set have now been identified. A meeting will be held on the 25th of May 2017 to determine the most appropriate way to measure each of these outcomes. Once the results have been published, a summary will be posted here along with a downloadable version of the study report.

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Summary

Through conduct of an online three-phase Delphi process, a core outcome set will be developed by a multi-disciplinary panel with either lived experience of gastroschisis, or expertise in management of gastroschisis. A final consensus meeting will be held with key stakeholders to ratify the core outcome set, and implement its use across gastroschisis research.

Background

Gastroschisis is increasingly common[1][2], affecting 3.5/10000 live births in the UK[3], and represents a condition where multiple surgical treatments exist. Systematic reviews[4][5] have failed to define which of the commonly used surgical repair strategies gives the best outcomes. This failure was due to the fact that, as well as the primary studies being of generally poor quality, there was significant heterogeneity in outcome reporting. Due to the poor quality existing evidence base, there are currently no evidence-based management guidelines for infants with gastroschisis.

Study Period

Phase 1 - February 2016

Phase 2 - April2016

Phase 3 - June 2016

Consensus Meeting - July 2016

Key objectives

  1. Determine which outcomes are currently reported in studies comparing surgical treatments for gastroschisis and assess the quality of reporting.
  2. Prioritise outcomes from patient/parent, paediatric surgical, and non-surgical clinician perspectives.
  3. Achieve consensus between key stakeholders on a core outcome set for assessing how successful the overall treatment of an infant with gastroschisis has been.
  4. Compare and contrast outcomes prioritised by patients/parents, surgeons and non-surgical clinicians.

Wider aims

  1. Refine methodology for countering difficulties likely to be seen in development of core outcome sets in all paediatric surgical conditions, including:
    1. Recruitment of parents and patients
    2. Incorporation of opinions from clinicians whose priorities vary dependent on their specialty, or age they encounter the child.

Participants

Target recruitment is at least fifty participants, spanning a wide-range of expertise, including paediatric surgeons, neonatologists, paediatricians, GPs, nurses, parents and patients.

View the full study protocol

Funding

National Institute for Health Research

Investigators

  • Mr Benjamin Allin, National Perinatal Epidemiology Unit.
  • Mr Andrew Ross, Oxford Children’s Hospital
  • Mr Sean Marven, Sheffield Children’s Hospital
  • Mr Nigel Hall, Southampton Children’s Hospital
  • Professor Jenny Kurinczuk, National Perinatal Epidemiology Unit
  • Professor Marian Knight, National Perinatal Epidemiology Unit

References

  1. ^ Laughon M, Meyer R, Bose C, Wall A, Otero E, Heerens A, et al. Rising birth prevalence of gastroschisis. Journal of perinatology : official journal of the California Perinatal Association. 2003;23(4):291-3.
  2. ^ Reid KP, Dickinson JE, Doherty DA. The epidemiologic incidence of congenital gastroschisis in Western Australia. American journal of obstetrics and gynecology. 2003;189(3):764-8.
  3. ^ Owen A, Marven S, Johnson P, Kurinczuk J, Spark P, Draper ES, et al. Gastroschisis: a national cohort study to describe contemporary surgical strategies and outcomes. J Pediatr Surg. 2010;45(9):1808-16.
  4. ^ Kunz SN, Tieder JS, Whitlock K, Jackson JC, Avansino JR. Primary fascial closure versus staged closure with silo in patients with gastroschisis: a meta-analysis. Journal of pediatric surgery. 2013;48(4):845-57.
  5. ^ Allin BS, Tse WH, Marven S, Johnson PR, Knight M. Challenges of improving the evidence base in smaller surgical specialties, as highlighted by a systematic review of gastroschisis management. PloS one. 2015;10(1):e0116908.