Title: Improving unwarranted variation in outcomes of children’s surgery through a new Children’s Surgery Outcome Reporting system using routinely available data (CSOR)
Funder: Department of Health and Social Care

Abstract: Half a million children in England and Wales undergo surgery each year. However, a national review of children’s surgery in the UK concluded that the outcomes of surgery for children were not as good as they should be. The authors of the report felt that one of the main reasons for this was due to difficulties in deciding which treatments were best for children. Parents of babies who have undergone early surgery, usually in the first 12 months of life (our Parent Advisory Group), who advised on a previous research project we carried out, identified that they received varying advice from different surgeons treating their babies, and that they had little information about how well babies recovered after surgery if they had different operations or were treated in different hospitals. The lack of information about which treatment is best or whether babies do better when they are cared for at different hospitals is partly because the different conditions babies have, which mean that they need an operation, are individually uncommon. It is also because there is no routine national system to describe how well babies recover after surgery and to compare how well they do in different hospitals. Importantly, there is no current system for parents to provide hospitals with information on how well their babies are recovering after surgery, to help the hospitals to improve the care they provide._x000D_ _x000D_ The aim of this project is to develop a system (the Children’s Surgery Outcomes Reporting system – CSOR) which combines electronic information collected routinely in hospitals with information provided with consent from parents to describe how well babies recover after surgery in different hospitals, and to investigate whether this system helps hospitals improve the care they provide._x000D_ _x000D_ The project is divided into six parts. The first part will identify what parents and clinicians consider is a good recovery after treatment for babies using a survey in which participants are asked to choose which they feel is better of different health outcomes (a ‘choice experiment’). The second part will identify which other information about babies’ health and treatments it will be important to collect by reviewing existing information systems and examining what factors previous studies have identified that affect children’s recovery. The third part will find out from parents how they wish to provide their perspectives on children’s care and how they would wish to provide consent for the inclusion of their baby’s information in the CSOR system. The fourth part will investigate different hospital electronic systems to determine how information can be used for CSOR from each system. The fifth part will develop a system for each hospital to view their own results to see how well the babies they operate on are doing, and the sixth part will investigate whether using this system helps hospitals to improve how well children recover after surgery._x000D_ _x000D_ The Parent Advisory Group who identified this as an important area for research will continue to advise on the design, management, interpretation and presentation of results throughout the project._x000D_ _x000D_ When the project is complete, we will communicate the results widely to parents, patients, doctors, nurses, managers and those responsible for health service design and policy through the groups which make up our Parent Advisory Group as well as through professional and NHS management organisations.

Lay abstract: Research question _x000D_ 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?_x000D_ _x000D_ Background _x000D_ 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. _x000D_ _x000D_ Aims and objectives _x000D_ 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._x000D_ _x000D_ Objectives:_x000D_ • To develop a summary metric of good outcome;_x000D_ • To develop structured, electronic operative records for case notification and collection of operative and outcome data and export information to a national database;_x000D_ • To incorporate parent-reported outcome information, data collected from hospitals’ existing EPR systems and national hospital episode data into the database;_x000D_ • To describe adjusted outcomes by centre;_x000D_ • To develop an online interface and facilitated feedback model for paediatric surgical centres that can be used to improve outcomes in and reduce variability._x000D_ _x000D_ Methods _x000D_ 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._x000D_ 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._x000D_ 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. _x000D_ 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._x000D_ 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._x000D_ WS6: Implementation study. A controlled before-after study will be conducted at the seven C-SOR pilot sites._x000D_ _x000D_ Timelines for delivery _x000D_ Aug 2020 Summary metric developed, core dataset items identified, consent process determined._x000D_ Aug 2021 Interface for inclusion of parent-reported outcomes developed._x000D_ Sep 2022 Data flows into C-SOR established._x000D_ Dec 2022 Feedback model and interface finalised._x000D_ Jun 2023 Case-mix adjusted model completed._x000D_ Sep 2024 Implementation study completed._x000D_ _x000D_ Anticipated impact and dissemination _x000D_ 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.

Research activity codes: 7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT);8.5 RESOURCES AND INFRASTRUCTURE (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE