What matters for people with brain cancer? Selecting clinical quality indicators for an Australian Brain Cancer Registry

Author:

Matsuyama Misa12,Sachchithananthan Mythily1,Leonard Robyn1,Besser Michael1,Nowak Anna K134,Truran Donna5,Vajdic Claire M16,Zalcberg John R178,Gan Hui K191011ORCID,Gedye Craig11213,Varikatt Winny11415,Koh Eng-Siew1161718,Kichenadasse Ganessan1920ORCID,Sim Hao-Wen1212223ORCID,Gottardo Nicholas G1242526ORCID,Spyridopoulos Desma1,Jeffree Rosalind L1227ORCID

Affiliation:

1. Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia

2. Faculty of Medicine, The University of Queensland, Herston, Queensland, Australia

3. Medical School, The University of Western Australia, Perth, Western Australia, Australia

4. Department of Medical Oncology, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia

5. Australian e-Health Research Centre, CSIRO, Herston, Queensland, Australia

6. Centre for Big Data Research in Health, University of New South Wales, Sydney, New South Wales, Australia

7. Faculty of Medicine, Nursing and Health Sciences, School of Public Health & Preventive Medicine, Monash University, Melbourne, Victoria, Australia

8. Department of Medical Oncology, Alfred Health, Melbourne, Victoria, Australia

9. Cancer Therapies and Biology Group, Centre of Research Excellence in Brain Tumours, Olivia Newton-John Cancer Wellness and Research Centre, Austin Hospital, Heidelberg, Melbourne, Victoria, Australia

10. La Trobe University School of Cancer Medicine, Heidelberg, Melbourne, Victoria, Australia

11. Department of Medicine, The University of Melbourne, Heidelberg, Melbourne, Victoria, Australia

12. Medical Oncology, Calvary Mater Newcastle, Waratah, New South Wales, Australia

13. Hunter Medical Research Institute, New Lambton Heights, New South Wales, Australia

14. Sydney Medical School West Precinct, The University of Sydney, Camperdown, New South Wales, Australia

15. Tissue Pathology and Diagnostic Oncology, ICPMR, Westmead Hospital, Westmead, New South Wales, Australia

16. Department of Radiation Oncology, Liverpool Hospital, Liverpool, New South Wales, Australia

17. Ingham Institute for Applied Medical Research, Liverpool, New South Wales, Australia

18. South Western Clinical School, University of New South Wales, Liverpool, New South Wales, Australia

19. Department of Clinical Pharmacology, College of Medicine and Public Health, Flinders University, Bedford Park, South Australia, Australia

20. Department of Medical Oncology, Flinders Centre for Innovation in Cancer, Flinders Medical Centre, Bedford Park, South Australia, Australia

21. St Vincent’s Clinical School, University of New South Wales, Sydney, New South Wales, Australia

22. Department of Medical Oncology, The Kinghorn Cancer Centre, Sydney, New South Wales, Australia

23. Department of Medical Oncology, Chris O’Brien Lifehouse, Sydney, New South Wales, Australia

24. Telethon Kids Institute, Perth Children’s Hospital, Nedlands, Western Australia, Australia

25. Centre for Child Health Research, University of Western Australia, Perth, Western Australia, Australia

26. Department of Oncology, Princess Margaret Hospital, Perth, Western Australia, Australia

27. Kenneth G. Jamieson Department of Neurosurgery, Royal Brisbane and Women’s Hospital, Herston, Queensland, Australia

Abstract

Abstract Background The goal of a clinical quality registry is to deliver immediate gains in survival and quality of life by delivering timely feedback to practitioners, thereby ensuring every patient receives the best existing treatment. We are developing an Australian Brain Cancer Registry (ABCR) to identify, describe, and measure the impact of the variation and gaps in brain cancer care from the time of diagnosis to the end of life. Methods To determine a set of clinical quality indicators (CQIs) for the ABCR, a database and internet search were used to identify relevant guidelines, which were then assessed for quality using the AGREE II Global Rating Scale. Potential indicators were extracted from 21 clinical guidelines, ranked using a modified Delphi process completed in 2 rounds by a panel of experts and other stakeholders, and refined by a multidisciplinary Working Group. Results Nineteen key quality reporting domains were chosen, specified by 57 CQIs detailing the specific inclusion and outcome characteristics to be reported. Conclusion The selected CQIs will form the basis for the ABCR, provide a framework for achievable data collection, and specify best practices for patients and health care providers, with a view to improving care for brain cancer patients. To our knowledge, the systematic and comprehensive approach we have taken is a world first in selecting the reporting specifications for a brain cancer clinical registry.

Funder

Australian Research Data Commons

Brain Cancer Collective Ltd

Publisher

Oxford University Press (OUP)

Subject

Medicine (miscellaneous)

Reference54 articles.

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