Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer.

TitleProtocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer.
Publication TypeJournal Article
Year of Publication2024
AuthorsHusson, O, Janssen, SHM, Reeve, BB, Sodergren, SC, Cheung, CK, McCabe, MG, Salsman, JM, van der Graaf, WTA, Darlington, A-S
JournalBMC Cancer
Volume24
Issue1
Pagination126
Date Published2024 Jan 24
ISSN1471-2407
KeywordsAdolescent, Data Collection, Health Facilities, Humans, Neoplasms, Vulnerable Populations, Young Adult
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.

DOI10.1186/s12885-023-11716-2
Alternate JournalBMC Cancer
PubMed ID38267900
PubMed Central IDPMC10809623