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What matters for people with brain cancer? Selecting clinical quality indicators for an Australian Brain Cancer Registry.
Matsuyama, Misa; Sachchithananthan, Mythily; Leonard, Robyn; Besser, Michael; Nowak, Anna K; Truran, Donna; Vajdic, Claire M; Zalcberg, John R; Gan, Hui K; Gedye, Craig; Varikatt, Winny; Koh, Eng-Siew; Kichenadasse, Ganessan; Sim, Hao-Wen; Gottardo, Nicholas G; Spyridopoulos, Desma; Jeffree, Rosalind L.
Afiliación
  • Matsuyama M; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Sachchithananthan M; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Leonard R; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Besser M; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Nowak AK; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Truran D; Australian e-Health Research Centre, CSIRO, Herston, Queensland, Australia.
  • Vajdic CM; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Zalcberg JR; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Gan HK; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Gedye C; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Varikatt W; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Koh ES; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Kichenadasse G; Department of Clinical Pharmacology, College of Medicine and Public Health, Flinders University, Bedford Park, South Australia, Australia.
  • Sim HW; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Gottardo NG; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Spyridopoulos D; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
  • Jeffree RL; Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
Neurooncol Pract ; 9(1): 68-78, 2022 Feb.
Article en En | MEDLINE | ID: mdl-35096405
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.
Palabras clave

Texto completo: 1 Bases de datos: MEDLINE Tipo de estudio: Guideline / Prognostic_studies Idioma: En Revista: Neurooncol Pract Año: 2022 Tipo del documento: Article País de afiliación: Australia

Texto completo: 1 Bases de datos: MEDLINE Tipo de estudio: Guideline / Prognostic_studies Idioma: En Revista: Neurooncol Pract Año: 2022 Tipo del documento: Article País de afiliación: Australia