As highlighted by the Chief Medical Officer, significant variation exists across the UK in health outcomes for children. Variation in outcomes and management has been highlighted specifically in many paediatric surgical conditions. This occurs partly because the low incidence (rarity) of many conditions of interest is preventing high-quality research from taking place.
The National Institute for Health Research have called for the development of programmes that increase the volume of high quality paediatric research. The NETS programme will answer this call through the development and implementation of interventions that will reduce the impact of low incidence on paediatric surgical research. In doing so, NETS will improve outcomes for infants requiring early surgery, develop evidence-based guidelines for their management, and make financial savings for the NHS.
NETS¹ will develop core outcome sets in order to standardise outcome reporting, thereby improving the reliability and validity of research. NETS² will then develop the collaborations and infrastructure required to utilise these core outcome sets in large-scale observational studies, the results of which can inform management guidelines and future randomised controlled trials.
Following successful implementation of NETS¹ and NETS², the intention is to expand the program to include NETS³ which will involve development of the collaborations and infrastructure required to conduct large scale randomised controlled trials in paediatric surgery.
To build upon the BAPS-CASS framework in order to develop a common pathway that will allow investigation of paediatric surgical interventions at all stages of the IDEAL pathway.
To develop core outcome sets for key paediatric surgical conditions.
To implement the use of core outcome sets in large-scale observational studies.
To inform development of randomised controlled trials comparing key paediatric surgical interventions.
Why is a new system needed?
Many paediatric surgical conditions are exceptionally rare, meaning that collaborative research is needed to address key clinical questions. There is currently little large-scale collaboration in paediatric surgical research.
Over 85% of paediatric surgical research uses methodology that isn’t appropriate for robustly investigating surgical interventions.
Many studies fail to address chance and confounding in their design, contain significant heterogeneity in the way interventions are defined, and report on outcomes that are irrelevant to patients.
The combination of these limitations has led to a lack of high quality evidence to support clinical practice in paediatric surgery. As a result, there is significant variability in the management of key conditions.
What can be done?
Use of core outcome sets reduces reporting bias, makes it easier to compare and combine results from small studies, and makes research more relevant to patients. In other conditions, including asthma and rheumatoid arthritis, their use has significantly increased the quality of research, and enabled improvements in care to be delivered.
High quality, large-scale, observational studies can robustly investigate the relationship between key surgical interventions and outcomes identified as important in the core outcome set.
Information from these observational studies can inform the generation of future randomised controlled trials, the answers from which can help standardise the delivery of paediatric surgical care in the UK, and in doing so, help to improve outcomes.
^Davies S. Annual Report of the Chief Medical Officer 2012, Our Children Deserve Better: Prevention Pays. In: Health Do, editor.: Williams Lea; 2013.
^Shribman S. NHS Atlas of Variation in Healthcare for Children and Young People. 2012.
^Burge DM, Shah K, Spark P, Shenker N, Pierce M, Kurinczuk JJ, et al. Contemporary management and outcomes for infants born with oesophageal atresia. The British journal of surgery. 2013;100(4):515-21.
^Skarsgard ED, Claydon J, Bouchard S, Kim PC, Lee SK, Laberge JM, et al. Canadian Pediatric Surgical Network: a population-based pediatric surgery network and database for analyzing surgical birth defects. The first 100 cases of gastroschisis. Journal of pediatric surgery. 2008;43(1):30-4; discussion 4.
^Allin B, Tse W, Johnson P, Marven S, Knight M. Challenges of improving the evidence base in smaller surgical specialties, as highlighted by a systematic review of gastroschisis management. Unpublished Systematic Review2014.
^Allin BSR, Campion-Smith T, Floyd E, Kimpton J, Swarbrick K, Williams E, Knight M. . What evidence is there to support clinical practice in paediatric surgery? A systematic review describing the study designs used in paediatric surgical research.: University of Oxford; 2014.
^Bautista-Molano W, Navarro-Compán V, Landewé RM, Boers M, Kirkham J, van der Heijde D. How well are the ASAS/OMERACT Core Outcome Sets for Ankylosing Spondylitis implemented in randomized clinical trials? A systematic literature review. Clin Rheumatol 2014; 33(9): 1313-22.