Core patient-centered outcomes for AYAs with cancer: a comprehensive review of the literature from the STRONG-AYA project

Abstract

Background: in adolescents and young adults (AYAs) with cancer the importance of patient-centered research outcomes is increasingly acknowledged and there is a need for consensus on the most relevant outcomes. This review provides a comprehensive overview of outcomes relevant to AYAs with cancer to develop an AYA-specific Core Outcome Set (COS), as part of the European project STRONG-AYA.

Methods: a literature search was conducted to identify relevant articles in five data-bases. Each article was reviewed by two independent researchers, using Rayyan (an online tool) to screen articles by their title/abstract, and then by their full text. Subse-quently, the data were extracted using a predefined, tailored extraction framework.

Results: in total, 17301 articles were screened, of which 1631 were included in the analyses. Registry studies (52.9%) were the most used study type. Well-represented continents were North-America (50.3%) and Europe (27.8%). Of the five core areas, functioning (47.0%) and epidemiology (44.9%) were covered most often, followed by physiological/clinical (42.4%), resource use (6.1%) and adverse events (4.5%). The out-come domains that were represented the most include mortality/survival (43.1%), de-livery of care (23.4%), outcomes relating to neoplasms (22.7%), and emotional func-tioning/well-being (19.2%).

Conclusion: this literature review provides a foundation for the development of an AYA-specific COS, to improve the relevance and efficiency of measuring outcomes, the pooling of (international) research data, and the value of care for current and future AYAs with cancer. Finalization and refinement of the COS should be a priority for fu-ture research.

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Identifiers

ORCID for Anna Hurley-Wallace: orcid.org/0000-0001-8790-1247

ORCID for Connor J. Tyler: orcid.org/0000-0002-9849-4074

ORCID for Katherine J. Hunt: orcid.org/0000-0002-6173-7319

ORCID for Kirsty Mollie Way: orcid.org/0009-0001-2287-1398

ORCID for Nicole Collaço: orcid.org/0000-0003-1398-9105

ORCID for Richard Wagland: orcid.org/0000-0003-1825-7587

ORCID for Samantha C. Sodergren: orcid.org/0000-0001-8755-146X

ORCID for Thomas J. Cartledge: orcid.org/0009-0006-9365-3407

ORCID for Anne-Sophie Darlington: orcid.org/0000-0003-4387-7278

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