Darlington, Anne-Sophie, Way, Kirsty Mollie, Collaco, Nicole B, Cairns, Charlotte, Hanebaum, Simone, Janssen, Silvie, Kosir, Urska, Mccabe, Martin G., Stark, Daniel, Sodergren, Samantha, van der Graaf, Winette and Husson, Olga (2025) Development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer: Core Outcome Set for adolescents and young adults with cancer. Lancet Oncology. (In Press)
Abstract
Adolescents and Young Adults (AYAs) aged 15-39 diagnosed with cancer are faced with unique challenges which impact key developmental milestones and can create complex care needs. The aim of this study was to reach international consensus on the minimum set of outcomes to measure through the development of a Core Outcome Set (COS). The COS development followed published methodological standards. A literature review and interviews with AYAs with cancer and healthcare professionals (HCPs) generated a comprehensive list of 129 outcomes, spanning clinical and patient-reported outcomes relevant to AYAs with cancer. A three-round online Delphi survey involving three stakeholder groups globally, was implemented to reach international consensus. Overall, 262 respondents participated in the Delphi survey, and 48.0% completed three survey rounds. Fifty-nine outcomes met consensus in round 3 and were taken forward to the consensus meeting. The final COS consists of 20 outcomes, including two on-treatment specific domains and three off-treatment specific domains. This study developed an AYA-specific COS which, when implemented in clinical care and research, will improve the relevance of research findings, enhance care delivery, and enable consistent data synthesis across studies. Future efforts will focus on refining measurement methods and ensuring global applicability.
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