Opportunities and challenges for the development of &quot;core outcome sets&quot; in neuro-oncology

Millward, C.P.; Armstrong, T.S.; Barrington, H.; Brodbelt, A.R.; Bulbeck, H.; Byrne, A.; Dirven, L.; Gamble, C.; Grundy, P.L.; Islim, A.I.; Javadpour, M.; Keshwara, S.M.; Krishna, S.T.; Mallucci, C.L.; Marson, A.G.; McDermott, M.W.; Meling, T.R.; Oliver, K.; Pizer, B.; Plaha, P.; Preusser, M.; Santarius, T.; Srikandarajah, N.; Taphoorn, M.J.B.; Watts, C.; Weller, M.; Williamson, P.R.; Zadeh, G.; Najafabadi, A.H.Z.; Jenkinson, M.D.

doi:doi:10.1093/neuonc/noac062

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...Show moreCore 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.Show less

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Opportunities and challenges for the development of "core outcome sets" in neuro-oncology