A new perspective on paediatric surgery worldwide: baby steps towards meaningful outcomes
05 Apr 2018
Paediatric Surgery Registrar and PhD Fellow Naomi Wright (King's Centre for Global Health and Health Partnerships)
Congenital anomalies, also known as congenital birth defects, result in half-a-million childhood deaths globally every year – one of the top five causes of death in children under five. Ninety-seven per cent of deaths from congenital anomalies occur in low- and middle-income regions and, whilst the number of deaths has fallen in middle- and high-income countries over the last quarter-century, the number continues to rise in low-income countries.
Management of congenital abnormalities varies greatly, influenced by education, training and the fluctuant availability of resources to local health care teams. Appropriate delivery of surgical care has the potential to relieve up to two-thirds of the deaths and disabilities associated with birth defects.
The Global PaedSurg study will launch in October 2018 in the hope that collaboration between surgeons and allied health professionals from multiple centres can help map, for the first time, the current management and outcomes of a selection of common congenital anomalies across the globe. Understanding the problem is the first step to raising the profile of congenital anomalies within the global health agenda and developing interventions to help improve outcomes.
The 2016/17 PaedSurg Africa initiative produced the largest prospective cohort study of neonatal and paediatric surgery across sub-Saharan Africa. Empowered by that study’s success, we plan to expand the research collaboration globally and include a wider selection of congenital anomalies. Expanding inter-continental alliances will drive ambitions for a global approach to achieving improved outcomes and permit a broader understanding of appropriate management strategies for neonates with birth defects in different settings.
Participants in the project will be drawn from all ranks, medical students to consultants, and can include any healthcare professional involved in the care of neonates presenting with one of the study conditions. These include oesophageal atresia, congenital diaphragmatic hernia, intestinal atresia, gastroschisis, exomphalos, Hirschsprung’s disease and anorectal malformation*.
Prospective data will be collected on patient demographics, clinical status, interventions and outcomes using the online, secure, user friendly, free-of-charge data collection tool REDCap. The number of data points per patient will be kept to a minimum to reduce the amount of time required for each collaborator to contribute to the study; the large dataset will be established through collective contribution.
All collaborators will be PubMed-Citable co-authors of the resultant publication(s). There will be the opportunity for collaborators to present the study locally, nationally and internationally – initially the study concept to recruit collaborators and later the results. This provides collaborators with the opportunity to apply for funding through international conference organisations to attend and present at such meetings.
Participation in the study will provide opportunities to develop core research skills including ethical application, patient identification, protocol application, data collection and use of REDCap for data upload and analysis. Following the study, training will be provided for those interested in developing and undertaking their own projects using REDCap. Joining the Global PaedSurg Research Collaboration will provide the opportunity for further collaborative research and interventional studies aimed at improving outcomes.
Further details can be found on our website at www.globalpaedsurg.com
*Description of conditions:
Oesophageal atresia – where a baby is born with the two ends of the food pipe not connected.
Congenital diaphragmatic hernia – where a baby is born with a hole in the diaphragm and intestines can go up into the chest where the lungs are.
Intestinal atresia – where a baby is born with a blockage in the intestines.
Gastroschisis – where a baby is born with the intestines protruding through a hole in their abdominal wall next to the tummy button.
Exomphalos – where a baby is born with their intestines and organs protruding into the umbilical cord.
Hirschsprung’s Disease – where the nerve supply has not developed in the baby’s intestine so it doesn’t work properly and becomes blocked.
Anorectal Malformation – when a baby is born without an anal opening.