1. Opportunities and challenges for the development of “core outcome sets” in neuro-oncology
- Author
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Millward, Christopher P, Armstrong, Terri S, Barrington, Heather, Brodbelt, Andrew R, Bulbeck, Helen, Byrne, Anthony, Dirven, Linda, Gamble, Carrol, Grundy, Paul L, Islim, Abdurrahman I, Javadpour, Mohsen, Keshwara, Sumirat M, Krishna, Sandhya T, Mallucci, Conor L, Marson, Anthony G, McDermott, Michael W, Meling, Torstein R, Oliver, Kathy, Pizer, Barry, Plaha, Puneet, Preusser, Matthias, Santarius, Thomas, Srikandarajah, Nisaharan, Taphoorn, Martin JB, Watts, Colin, Weller, Michael, Williamson, Paula R, Zadeh, Gelareh, Najafabadi, Amir H Zamanipoor, and Jenkinson, Michael D
- Subjects
Clinical Trials and Supportive Activities ,Rare Diseases ,Neurosciences ,Clinical Research ,Cancer ,Brain Disorders ,Brain Cancer ,Evaluation of treatments and therapeutic interventions ,6.9 Resources and infrastructure (treatment evaluation) ,Generic health relevance ,Adult ,Child ,Consensus ,Delphi Technique ,Humans ,Meningeal Neoplasms ,Meningioma ,Research Design ,Treatment Outcome ,clinical trial ,core outcome set ,effectiveness ,glioma ,meningioma ,Oncology and Carcinogenesis ,Oncology & Carcinogenesis - Abstract
Core Outcome Sets (COS) define minimum outcomes to be measured and reported in clinical effectiveness trials for a particular health condition/health area. Despite recognition as critical to clinical research design for other health areas, none have been developed for neuro-oncology. COS development projects should carefully consider: scope (how the COS should be used), stakeholders involved in development (including patients as both research partners and participants), and consensus methodologies used (typically a Delphi survey and consensus meeting), as well as dissemination plans. Developing COS for neuro-oncology is potentially challenging due to extensive tumor subclassification (including molecular stratification), different symptoms related to anatomical tumor location, and variation in treatment options. Development of a COS specific to tumor subtype, in a specific location, for a particular intervention may be too narrow and would be unlikely to be used. Equally, a COS that is applicable across a wider area of neuro-oncology may be too broad and therefore lack specificity. This review describes why and how a COS may be developed, and discusses challenges for their development, specific to neuro-oncology. The COS under development are briefly described, including: adult glioma, incidental/untreated meningioma, meningioma requiring intervention, and adverse events from surgical intervention for pediatric brain tumors.
- Published
- 2022