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Oncology
Cohort profile
The Upper Gastrointestinal Cancer Registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers
  1. Ashika D Maharaj1,
  2. Jennifer F Holland1,
  3. Ri O Scarborough1,
  4. Sue M Evans1,
  5. Liane J Ioannou1,
  6. Wendy Brown2,
  7. Daniel G Croagh3,
  8. Charles H C Pilgrim4,
  9. James G Kench5,
  10. Lara R Lipton6,
  11. Trevor Leong7,
  12. John J McNeil1,
  13. Mehrdad Nikfarjam8,
  14. Ahmad Aly9,
  15. Paul R Burton2,
  16. Paul A Cashin3,
  17. Julie Chu7,
  18. Cuong P Duong7,
  19. Peter Evans10,
  20. David Goldstein11,
  21. Andrew Haydon4,
  22. Michael W Hii12,
  23. Brett P F Knowles13,
  24. Neil D Merrett14,
  25. Michael Michael7,
  26. Rachel E Neale15,
  27. Jennifer Philip12,
  28. Ian W T Porter16,
  29. Marty Smith4,
  30. John Spillane7,
  31. Peter P Tagkalidis4,
  32. John R Zalcberg1,4
  1. 1 Public Health and Preventative Medicine, Monash University, Melbourne, Victoria, Australia
  2. 2 Department of Surgery, Monash University, Melbourne, Victoria, Australia
  3. 3 Monash Health, Melbourne, Victoria, Australia
  4. 4 Alfred Health, Melbourne, Victoria, Australia
  5. 5 Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
  6. 6 Western Health, Melbourne, Victoria, Australia
  7. 7 Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia
  8. 8 Department of Surgery, Austin Health, University of Melbourne, Melbourne, Victoria, Australia
  9. 9 Austin Health, Melbourne, Victoria, Australia
  10. 10 Peninsula Health, Melbourne, Victoria, Australia
  11. 11 Nelune Comprehensive Cancer Centre, Prince of Wales, Randwick, New South Wales, Australia
  12. 12 St Vincent's Hospital, Melbourne, Victoria, Australia
  13. 13 Royal Melbourne Hospital, Melbourne, Victoria, Australia
  14. 14 School of Medicine, Western Sydney University, Penrith South, New South Wales, Australia
  15. 15 Population Health Division, QIMR Berghofer Medical Research Institute, Herston, Queensland, Australia
  16. 16 Cabrini Health, Malvern, Victoria, Australia
  1. Correspondence to Professor John R Zalcberg; john.zalcberg{at}monash.edu

Abstract

Purpose The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia.

Participants It supports four cancer modules: pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation.

Findings to date The UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile.

Future plans The UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding of the care of patients with these cancers.

  • pancreatic cancer
  • oesophageal cancer
  • gastric cancer
  • liver cancer
  • biliary cancer
  • upper gastrointestinal cancers
  • clinical registry
  • quality improvement
  • quality of care
  • database
  • population health

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2019-031434

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    Footnotes

    • ADM and JFH contributed equally.

    • Contributors ADM and JFH are joint first authors on this manuscript. SME, WAB, DGC, CHCP, JGK, LRL, TL, JJM, MN and JZ are part of the UGICR Steering Committee. SME, LI, WAB, DGC, CHCP, JGK, LRL, TL, MN, AA, PRB, PAC, JC, CD, PE, DG, AH, MWH, BPFK, NM, MM, REN, JP, IWTP, MS, JS, PPT and JZ are part of the working parties. RS and JFH developed the registry protocol in consultation with the UGICR Steering Committee and working parties. All authors reviewed and provided feedback on the drafts of the manuscript and approved the final version.

    • Funding The authors gratefully acknowledge the Victorian Government, Pancare Foundation, Specialised Therapeutics Australia, Servier Australia, Eli Lilly Australia, and the Australian National Health and Medical Research Council for the Pancreatic Cancer Registry for Quality Improvement grant (grant number APP1125395). The Victorian Government and Pancare Foundation were involved in the design of the study through steering committee representation.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval This project has received human research ethics committee (HREC) approval from the following HRECs: Monash Health (Ref: 15482A) under the National Mutual Acceptance scheme (HREC/15/MonH/134); Cancer Council Victoria (HREC 1611); Epworth HealthCare (EH2017-227), Aboriginal Health & Medical Research Council (1387/18) and is registered with Monash University (CF16/119-2016000051).

    • Provenance and peer review Not commissioned; externally peer reviewed.