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

• Published in: BMC cancer Vol. 24; no. 1; pp. 126 - 12
• Main Authors: 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, Darlington, Anne-Sophie
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 24.01.2024; BioMed Central; BMC
• Subjects: Adolescents; Adolescents and young adults; Age groups; AYAs; Body image; Cancer; Cancer patients; Care and treatment; Careers; Caregivers; Clinical trials; COMET; Community support; Core measurement set; Core outcome set; Data collection; Health aspects; Infertility; Literature reviews; Medical diagnosis; Medical prognosis; Oncology; Quality of life; Quality standards; Self image; Social aspects; Stakeholders; Study Protocol; Teenagers; Tumors; Working groups; Young adults; Youth; Netherlands; AYAs; Core measurement set; Adolescents and young adults; COMET; Outcome; Oncology; Core outcome set; Consensus
• ISSN: 1471-2407; 1471-2407
• DOI: 10.1186/s12885-023-11716-2

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. 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. 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.