Protocol for the Development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with Cancer

Overview

Journal BMC Cancer

Publisher Biomed Central

Specialty Oncology

Date 2024 Jan 24

PMID 38267900

Authors

Olga Husson

Silvie H M Janssen

Bryce B Reeve

Samantha C Sodergren

Christabel K Cheung

Martin G McCabe

John M Salsman

Winette T A van der Graaf

Anne-Sophie Darlington

Affiliations

Soon will be listed here.

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.

Citing Articles

Core Patient-Centered Outcomes for Adolescents and Young Adults with Cancer: A Comprehensive Review of the Literature from the STRONG-AYA Project.

Janssen S, van der Graaf W, Hurley-Wallace A, Vlooswijk C, Padilla C, Cairns C Cancers (Basel). 2025; 17(3).

PMID: 39941821 PMC: 11816189. DOI: 10.3390/cancers17030454.

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