Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer
Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer
Background: adolescents and young adults (AYAs) with cancer, defined as individuals aged 15–39 years at initial cancer diagnosis, form a unique population; they face age-specific issues as they transition to adulthood. This paper presents the protocol for the development of a core outcome set (COS) for AYAs with cancer.
Methods: the methodological standards from the Core Outcome Measures in Effectiveness Trials (COMET) and the International Consortium for Health Outcomes Measurement (ICHOM) for COS development will guide the development of the COS for AYAs with cancer. The project will consist of the following phases: (1) define the scope of the COS; (2) establish the need for a COS in this field (3) assemble an international, multi-stakeholder working group; (4) develop a detailed protocol; (5) determine “what to measure” (i.e., outcomes); (6) determine “how to measure” (i.e., measures); and (7) determine “case-mix” variables.
Conclusions: the development of a COS for AYAs with cancer will facilitate the implementation of efficient and relevant standards for data collection, both for clinical trials and in routine healthcare, thereby increasing the usefulness of these data to improve the value of the care given to these underserved young cancer patients.
Adolescents and young adults, AYAs, COMET, Consensus, Core measurement set, Core outcome set, Oncology, Outcome
Husson, Olga
956f3071-698e-4221-adb5-4c7e10946670
Janssen, Silvie H.M.
958e8186-8f35-4d40-8926-3e283f35acb9
Reeve, Bryce B.
928b698c-ebdd-45a0-87a2-cb0158219d58
Sodergren, Samantha C.
d66fc3fa-2c98-403d-8ae5-410ef95de46e
Cheung, Christabel K.
3b55a994-0615-42b2-b7a6-f17ee4bc70fb
McCabe, Martin G.
47a6cbf8-2782-4066-bc57-deee72a02084
Salsman, John M.
d13db600-df8e-4f3e-a829-9efe304d3fdd
van der Graaf, Winette T.A.
ca6c9186-6bb1-4774-88cd-0fc01d6e351e
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
24 January 2024
Husson, Olga
956f3071-698e-4221-adb5-4c7e10946670
Janssen, Silvie H.M.
958e8186-8f35-4d40-8926-3e283f35acb9
Reeve, Bryce B.
928b698c-ebdd-45a0-87a2-cb0158219d58
Sodergren, Samantha C.
d66fc3fa-2c98-403d-8ae5-410ef95de46e
Cheung, Christabel K.
3b55a994-0615-42b2-b7a6-f17ee4bc70fb
McCabe, Martin G.
47a6cbf8-2782-4066-bc57-deee72a02084
Salsman, John M.
d13db600-df8e-4f3e-a829-9efe304d3fdd
van der Graaf, Winette T.A.
ca6c9186-6bb1-4774-88cd-0fc01d6e351e
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Husson, Olga, Janssen, Silvie H.M., Reeve, Bryce B., Sodergren, Samantha C., Cheung, Christabel K., McCabe, Martin G., Salsman, John M., van der Graaf, Winette T.A. and Darlington, Anne-Sophie
(2024)
Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer.
BMC Cancer, 24 (1), [126].
(doi:10.1186/s12885-023-11716-2).
Abstract
Background: adolescents and young adults (AYAs) with cancer, defined as individuals aged 15–39 years at initial cancer diagnosis, form a unique population; they face age-specific issues as they transition to adulthood. This paper presents the protocol for the development of a core outcome set (COS) for AYAs with cancer.
Methods: the methodological standards from the Core Outcome Measures in Effectiveness Trials (COMET) and the International Consortium for Health Outcomes Measurement (ICHOM) for COS development will guide the development of the COS for AYAs with cancer. The project will consist of the following phases: (1) define the scope of the COS; (2) establish the need for a COS in this field (3) assemble an international, multi-stakeholder working group; (4) develop a detailed protocol; (5) determine “what to measure” (i.e., outcomes); (6) determine “how to measure” (i.e., measures); and (7) determine “case-mix” variables.
Conclusions: the development of a COS for AYAs with cancer will facilitate the implementation of efficient and relevant standards for data collection, both for clinical trials and in routine healthcare, thereby increasing the usefulness of these data to improve the value of the care given to these underserved young cancer patients.
Text
Husson_2023_BMCCancer
- Accepted Manuscript
Text
s12885-023-11716-2
- Version of Record
More information
Accepted/In Press date: 4 December 2023
Published date: 24 January 2024
Additional Information:
This research was funded by EU Horizon Europe (HORIZON-HLTH-2021-CARE-05 grant no. 101057482 and by Innovate UK (UK Research and Innovation) grants 10038931, 10039273, 10041045, and 1004418 under the UK government’s Horizon Europe funding guarantee.
Publisher Copyright:
© 2024, The Author(s).
Keywords:
Adolescents and young adults, AYAs, COMET, Consensus, Core measurement set, Core outcome set, Oncology, Outcome
Identifiers
Local EPrints ID: 486997
URI: http://eprints.soton.ac.uk/id/eprint/486997
ISSN: 1471-2407
PURE UUID: 7ccf09b3-ca2e-4f0e-83f6-6a2a81236a1e
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Date deposited: 09 Feb 2024 17:36
Last modified: 13 Apr 2024 01:45
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Contributors
Author:
Olga Husson
Author:
Silvie H.M. Janssen
Author:
Bryce B. Reeve
Author:
Christabel K. Cheung
Author:
Martin G. McCabe
Author:
John M. Salsman
Author:
Winette T.A. van der Graaf
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