Researchers at Oxford Population Health’s National Perinatal Epidemiology Unit and ten children’s surgical hospitals across England and Scotland will use a service provided by NHS DigiTrials to investigate whether care and outcomes could be improved for children who have six conditions that usually need complex surgery shortly after birth.
The Children’s Surgery Outcome Reporting (CSOR) programme aims to identify any differences between hospitals in the care that they provide for children who have six conditions that are likely to need an operation early in life. The programme also looks at how the care may affect the children’s health and quality of life as they get older. The findings are then used to provide hospitals with recommendations for how they can improve care for these children.
NHS DigiTrials was developed by the Oxford University Big Data Institute, in partnership with NHS Digital, IBM, and Microsoft to provide safe, authorised access to patient data to help trials reach and benefit as many people as possible; it is now managed by NHS England. The study recruitment service identifies patients who might be suitable to take part in research studies. The service also contacts patients on behalf of researchers to tell them about the study and ask them if they would like to take part.
CSOR will use the NHS DigiTrials service to contact parents of children who have one of these six different conditions, in order to ask them about their child’s quality of life. This information will be linked with information that is collected directly from hospitals and from other NHS England resources, and will be used to identify any differences in the care that the children received. A feedback process will then be delivered that will help hospitals to understand what actions they can to take to improve care.
In the early phases of the programme researchers are aiming to collect information for about 550 children per year with; Hirschsprung’s disease, gastrochisis, congenital diaphragmatic hernia, oesophageal hernia, necrotising enterocolitis, and posterior urethal valves. If the programme is successful, it is expected that this number will more than double as additional hospitals are included. The parents of these children will be contacted by post with more details about the study and how to participate.
Benjamin Allin, Academic Clinical Lecturer in Paediatric Surgery at the National Perinatal Epidemiology Unit, said ‘The Children’s Surgery Outcome Reporting research database is designed to help improve how successfully children with six rare surgical conditions are treated. Participating in the NHS Digitrials project has given us a mechanism to invite the parents of a large group of children with these conditions to join the database.
'Without this mechanism, the number we could invite would be much smaller, and our ability to understand what influences the success of treatment would be much more limited. By collecting information from a larger group we will be better able to help hospitals that are participating in the research database to improve the way they treat children with rare surgical conditions.’
The CSOR programme is a five-year collaboration between the National Perinatal Epidemiology Unit, paediatric surgeons from Alder Hey, Oxford, Southampton, Glasgow, Cambridge, Royal Manchester, Chelsea & Westminster, Birmingham, Evelina London and Great Ormond Street Children's Hospitals, and parents of children who have undergone early surgery. It is funded by the National Institute for Health and Care Research (NIHR) and led by Professors Marian Knight (National Perinatal Epidemiology Unit) and Simon Kenny (University of Liverpool).