Award Title: Improving the diagnosis of oesophageal and gastric cancers by system-wide identification and analysis of missed diagnoses of oesophageal and gastric cancers during endoscopy
Funder: Department of Health and Social Care

Abstract: Research question  Why does endoscopy fail to diagnose upper gastrointestinal cancer and how can we make this a less common occurrence in future?  Background  Missing oesophageal and gastric cancers at endoscopy and consequent diagnostic delays reduce the chance of cure and survival. Having an endoscopy that does not diagnose cancer but later being found to have oesophageal or gastric cancer is termed post endoscopy upper GI cancer (PEUGIC). This occurs in approximately 8% of people with oesophageal or gastric cancer. Suboptimal endoscopy quality will be one of the main reasons and there is known to be unwarranted variation in endoscopy performance between hospitals. Understanding the reasons for PEUGIC through detailed review of all aspects of the endoscopy and associated clinical care at the hospital where it was undertaken and identifying correctable factors are vital to saving lives from oesophageal and gastric cancer.  Aims and objectives  Phase 1. Identify all PEUGIC prospectively in the English NHS  Phase 2. Develop a secure web-based PEUGIC root cause analysis tool  Phase 3. Quantify the reasons why PEUGIC occur at a national level  Phase 4. Develop local and national interventions to reduce the occurrence of PEUGIC  Methods  Linkage of almost real-time Hospital Episode Statistics and National Cancer Registration and Analysis Service databases every quarter to enable identification of people with oesophageal and stomach cancer who had an endoscopy in the previous 6-36 months, where their cancer was not detected (PEUGIC). Based on the current national root cause analysis tool for post colonoscopy colorectal cancer, a proforma will be developed that captures the data items required to undertake a comprehensive root cause analysis of PEUGIC. The system will enable every endoscopy provider to be informed of each PEUGIC soon after the patient is diagnosed with cancer and the need for a root cause analysis, but also facilitate this by providing a structured method to report the results of the root cause analysis. The results will be captured centrally to enable collation and analysis of the reasons for PEUGIC at a national level. This will enable the identification of for example high-risk patient groups or endoscopy practices for PEUGIC.The intelligence generated will then be used to suggest interventions to reduce the incidence of PEUGIC through local and national quality improvement efforts.  Timelines for delivery  We plan to begin in July 2022 with phases 1 and 2 delivered within a year and phases 3 and 4 in the second year of the project.  Anticipated impact and dissemination  The project will improve the process of diagnosis of people with oesophageal and gastric cancer and reduce the number of missed diagnostic opportunities.    National organisations responsible for endoscopy standards will share the learning from PEUGIC cases with hospitals throughout the UK, in coordination with the research team and press releases.    Our PPI partners will contribute to dissemination of the learning through social media and their websites.       A summary of the detailed analysis of missed cancer cases will be presented at conferences and published in medical journals to further share learning internationally.

Lay Abstract: Aims       We want to find out why cancer may not be found during endoscopy (flexible telescope examination of the oesophagus (gullet) and stomach), to reduce the risk in future.       Background        15,800 people in the UK are diagnosed with oesophageal or stomach cancer annually. Around 8% (approximately 1200 per year) had an endoscopy that did not find their cancer in the three years before diagnosis. This is known as post-endoscopy upper gastrointestinal cancer or  missed  cancer.  Missing cancers is bad, as the earlier they are identified, the more treatable they are and the better the outcome.  This research is needed to find out why cancer is missed at endoscopy, tackle differences between hospitals and reduce missed cancers.       The second highest endoscopy research priority for the British Society of Gastroenterology is "How can we improve the quality of upper gastrointestinal endoscopy?”. The rate of missed cancer endoscopy is the most important endoscopy quality measure.             Design and methods used      Developed with the assistance of the Research Design Service.       We have experience of using routine NHS data to identify missed cancers that occurred in the past. However, to make a difference to endoscopy now, we need to identify and investigate missed cancers as soon as possible after they occur.        This project will:       1. Adapt methods we have used successfully to identify and investigate missed bowel cancers. When a new potentially missed oesophageal or stomach cancer is found, we will tell the hospital who did the endoscopy and ask them to review the records in detail to understand why it was missed (root cause analysis).        2. Pool the results of these detailed analyses of missed cancers nationally to understand the common reasons for cancers being missed. Use these results to get the NHS to take steps to limit missing cancers in future.      Patient and public involvement       Mimi McCord, chair of Heartburn Cancer UK (co-applicant and co-author of this summary) commented “It is imperative that an accurate diagnosis is achieved at the first endoscopy.  Early diagnosis is vital to achieve a good outcome and possible cure with a cancer that has an appalling prognosis.”       Heartburn Cancer UK, Action Against Heartburn and the Oxfordshire Oesophageal and Stomach Organisation fully support this project and have contributed to the study design, particularly around, as far as possible, having a “no blame” approach, and being open with patients when cancer is found to be missed.          Dissemination       National organisations responsible for endoscopy standards will encourage participation through the external approval of endoscopy units and share the learning from missed cancer cases with hospitals throughout the UK.         A summary of the detailed analysis of missed cancer cases will be presented at conferences and published in medical journals to further share learning internationally.

Research Activity Codes: 7.3 MANAGEMENT AND DECISION MAKING
Health Categories: CANCER AND NEOPLASMS