ActivePublic Health & HealthcarePregnancy, Children & Inherited Conditions
Improving unwarranted variation in outcomes of children’s surgery through a new Children’s Surgery Outcome Reporting system using routinely available data (CSOR)
A 2011 review found that children’s surgical outcomes across the UK vary too much between hospitals, and this project aims to fix that by building a national reporting system that tracks results for every paediatric surgery centre. The problem is unwarranted variation: a child’s chance of a good outcome after surgery should not depend on which hospital treats them, but currently it does. The researchers will develop a single summary metric that defines a “good outcome” by combining common complications and parent-reported experiences. They will then create structured electronic operative records, link those to existing hospital data and national hospital episode statistics, and add parent-reported information through a consent process designed with families. Seven pilot sites will test the system in a controlled before-after study. If successful, the Children’s Surgery Outcome Reporting system (C-SOR) will give each centre benchmarked, risk-adjusted feedback on its own performance. Surgeons and hospital managers could then identify where outcomes lag and make targeted improvements. Over time, this could reduce the gap between the best- and worst-performing centres, raising the overall standard of children’s surgery across the NHS without requiring new treatments or equipment—just better information about what is actually happening.
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Research question Is it 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? Background In 2011 a review of children’s surgery in the UK concluded that outcomes were not as good as they should be. Variation in management across centres is a key factor contributing to worse outcomes. Aims and objectives Aim: To collect paediatric surgical outcomes data using a system that links routinely collected data and parent reported outcome data, providing a platform for centre specific feedback of outcomes to reduce unwarranted variation. Objectives: • To develop a summary metric of good outcome; • To develop structured, electronic operative records for case notification and collection of operative and outcome data and export information to a national database; • To incorporate parent-reported outcome information, data collected from hospitals’ existing EPR systems and national hospital episode data into the database; • To describe adjusted outcomes by centre; • To develop an online interface and facilitated feedback model for paediatric surgical centres that can be used to improve outcomes in and reduce variability. Methods WS1: Development of a summary metric. A discrete choice experiment will be conducted to identify combinations of common outcomes with the highest probability indicating optimal treatment and produce a summary metric. WS2: Identification of C-SOR core dataset items. Existing operative records will be reviewed and common items will be identified and unified into a single record for each of the included conditions. A systematic review will be conducted to identify patient factors that affect outcome to be included in a long list of provisional core data items for the C-SOR. WS3: Collecting parent reported aspects of the minimum dataset. Focus groups will be conducted with parents to determine how they would like to be approached to provide consent for inclusion of data in the C-SOR database and how they would like to input information. WS4: Developing the C-SOR to collect the minimum dataset from multiple sources. Data flows from the electronic operative record, existing hospital systems, national hospital episode data and parent report into the C-SOR will be established. WS5: Development of the feedback model. The feedback model and interface will be developed using a co-design process. Data from the initial three month implementation phase of the C-SOR database will be used to develop the case-mix adjustment model. WS6: Implementation study. A controlled before-after study will be conducted at the seven C-SOR pilot sites. Timelines for delivery Aug 2020 Summary metric developed, core dataset items identified, consent process determined. Aug 2021 Interface for inclusion of parent-reported outcomes developed. Sep 2022 Data flows into C-SOR established. Dec 2022 Feedback model and interface finalised. Jun 2023 Case-mix adjusted model completed. Sep 2024 Implementation study completed. Anticipated impact and dissemination Data collected by the C-SOR system will be used to develop benchmarked, auditable standards for delivery of paediatric surgical services. We will use a wide range of routes to disseminate the results to children, parents, professionals and policy-makers.
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