CSOR: Children’s Surgery Outcome Reporting Research Database (CSOR)

Research summary

Objective of the proposed project: The overall objective of the Children’s Surgery Outcome Reporting (CSOR) programme is to investigate whether it is possible to collect paediatric surgical outcomes data using a system that links routinely collected data and parent reported outcome data and provides a platform for centre specific feedback of outcomes in order to reduce unwarranted outcome variation. Why the project is necessary: At present,significant variation exists in the way children with surgical conditions are managed. Some of this variation is expected and unimportant,but some is unwarranted and associated with variation in outcome. Due to multiple limitations in the paediatric surgical data that are available for analysis (both in terms of research data,and real-time centre specific outcomes data),it is not possible to differentiate the two. There are therefore children being treated for surgical conditions whose outcomes are worse than they would be if better data were available for analysis. Summary of methodology: Previous work has suggested that the best route to collecting high quality,nuanced data about children with surgical conditions would be to extract operative and case mix adjustment data directly from the child’s electronic health record,and then link this to long term outcomes data (HES),and outcomes data supplied directly from parents. The CSOR research database will be established to collect these data and they will be used to identify unwarranted variation between hospitals in management and outcomes of children with surgical conditions. The collected data will include basic demographic and co-morbidity data,detailed treatment data,long-term health outcomes data,and parent-proxy reported quality of life data. The collected data will primarily be used to determine whether hospitals observed outcomes differ to the outcomes expected based upon the case-mix of the children they have treated. This analysis will inform a facilitated feedback process through which participating sites are helped to understand why the outcomes they have achieved for children are better or worse than would be expected. This closed loop of data collection,analysis and feedback will help hospitals understand how they can improve their practice,and will facilitate rapid identification and sharing of good practice. A secondary use of the collected data will be to conduct studies falling within the remit of improving the health and wellbeing of children with surgical conditions. To begin with,the CSOR research database will collect information about children with necrotising enterocolitis,Hirschsprung’s disease,congenital diaphragmatic hernia,oesophageal atresia,gastroschisis and posterior urethral valves. However,it is expected that in the future,the database will also collect information about children with other surgical conditions.

Principal Investigator

Miss Kokila K Lakhoo

Contact us

Website: npeu.ox.ac.uk/csor

Email: csor@npeu.ox.ac.uk

IRAS number

302622