Development of an Australia and New Zealand Lung Cancer Clinical Quality Registry: a protocol paper

Our plain-English summary of Development of an Australia and New Zealand Lung Cancer Clinical Quality Registry: a protocol paper, by S. Smith, M. Brand, S. Harden, et al (BMJ Open, 2022).

The study

• Authors: S. Smith, M. Brand, S. Harden, L. Briggs, L. Leigh, F. Brims, M. Brooke, V.N. Brunelli, C. Chia, P. Dawkins, R. Lawrenson, M. Duffy, S. Evans, T. Leong, H. Marshall, D. Patel, N. Pavlakis, J. Philip, N. Rankin, N. Singhal, E. Stone, R. Tay, S. Vinod, M. Windsor, G.M. Wright, D. Leong, J. Zalcberg, R.G. Stirling
• Journal: BMJ Open
• Published: 2022;12(8):e060907
• Cited by: 7 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Introduction: Lung cancer is the leading cause of cancer mortality, comprising the largest national cancer disease burden in Australia and New Zealand. Regional reports identify substantial evidence-practice gaps, unwarranted variation from best practice, and variation in processes and outcomes of care between treating centres. The Australia and New Zealand Lung Cancer Registry (ANZLCR) will be developed as a Clinical Quality Registry to monitor the safety, quality and effectiveness of lung cancer care in Australia and New Zealand.

Methods And Analysis: Patient participants will include all adults >18 years of age with a new diagnosis of non-small-cell lung cancer (NSCLC), SCLC, thymoma or mesothelioma. The ANZLCR will register confirmed diagnoses using opt-out consent. Data will address key patient, disease, management processes and outcomes reported as clinical quality indicators. Electronic data collection facilitated by local data collectors and local, state and federal data linkage will enhance completeness and accuracy. Data will be stored and maintained in a secure web-based data platform overseen by registry management. Central governance with binational representation from consumers, patients and carers, governance, administration, health department, health policy bodies, university research and healthcare workers will provide project oversight.

Ethics And Dissemination: The ANZLCR has received national ethics approval under the National Mutual Acceptance scheme. Data will be routinely reported to participating sites describing performance against measures of agreed best practice and nationally to stakeholders including federal, state and territory departments of health. Local, regional and (bi)national benchmarks, augmented with online dashboard indicator reporting will enable local targeting of quality improvement efforts.

© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

In plain English

This protocol paper described plans for the Australia and New Zealand Lung Cancer Registry, a clinical quality registry to monitor the safety, quality and effectiveness of lung cancer care in the two countries. It reported no results from that planned registry. The registry was to include adults 18 years or older with a confirmed diagnosis of non-small-cell lung cancer, small-cell lung cancer, mesothelioma or thymoma diagnosed, assessed or treated at a participating site, unless they opted out. Hospitals were to receive reports comparing their care with agreed best practice. To show the approach in practice, the paper presented 2019 figures from the existing Victorian Lung Cancer Registry, which covered non-small-cell and small-cell lung cancer. For example, among 2114 patients, a mean of 68% had documented presentation to a multidisciplinary meeting. The paper did not study asbestos exposure and reported no findings about mesothelioma. The authors stated that hospital participation needed a national mandate and that national funding had not yet been established. They concluded that local, regional and national benchmarks, with online dashboard reporting, would enable local targeting of quality improvement efforts.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Protocol paper describing a planned binational clinical quality registry that will register confirmed diagnoses using opt-out consent. It reports no results from the planned registry. It presents 2019 data from the existing Victorian Lung Cancer Registry as a proof of concept.
• Who was studied: Planned registry population: all patients 18 years or older with a confirmed diagnosis of primary thoracic malignancy (NSCLC, SCLC, mesothelioma or thymoma) who were diagnosed, assessed and/or treated at a participating site in Australia or New Zealand. The registry was established in 2021–2022. The existing Victorian Lung Cancer Registry, whose data are shown, covers newly diagnosed Victorian cases of NSCLC and SCLC.
• Exposure: Not an exposure study. No asbestos exposure, fiber types, products or jobs are studied. Mesothelioma is one of the diagnoses eligible for the planned registry.
• Main results:
  • Victorian Lung Cancer Registry 2019 (n=2114 subjects): the mean proportion of patients with documented presentation to a multidisciplinary meeting was 68%. This is shown as a funnel plot across health services.
  • The Victorian Lung Cancer Registry covers NSCLC and SCLC. It reports annually on 21 performance indicators to 19 health services.
• The authors' conclusion: The authors concluded that local, regional and (bi)national benchmarks, together with online dashboard indicator reporting, will enable local targeting of quality improvement efforts.
• Limitations the authors state:
  • A national mandate for hospitals to take part and report is needed to support local governance and data collection, and to limit potential inclusion bias from over-representation of high-performing centres.
  • National funding for the registry had not yet been established.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Lung cancer.

Medical terms in this study, explained in our Lexicon: Lung Cancer, Mesothelioma.

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• Laying the Foundation for a Mesothelioma Patient Registry: Development of Data Collection Tools — J.M. Gaitens, M. Culligan, et al. (2023)
• Development of a Job-Exposure Matrix (AsbJEM) to Estimate Occupational Exposure to Asbestos in Australia — S.C. van Oyen, S. Peters, et al. (2015)

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