{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T16:26:27Z","timestamp":1790353587779,"version":"4.1.0"},"reference-count":29,"publisher":"MDPI AG","issue":"3","license":[{"start":{"date-parts":[[2025,1,28]],"date-time":"2025-01-28T00:00:00Z","timestamp":1738022400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"EU Horizon Europe","award":["101057482"],"award-info":[{"award-number":["101057482"]}]},{"name":"EU Horizon Europe","award":["10038931"],"award-info":[{"award-number":["10038931"]}]},{"name":"EU Horizon Europe","award":["10041045"],"award-info":[{"award-number":["10041045"]}]},{"name":"EU Horizon Europe","award":["1004418"],"award-info":[{"award-number":["1004418"]}]},{"name":"Innovate UK (UK Research and Innovation)","award":["101057482"],"award-info":[{"award-number":["101057482"]}]},{"name":"Innovate UK (UK Research and Innovation)","award":["10038931"],"award-info":[{"award-number":["10038931"]}]},{"name":"Innovate UK (UK Research and Innovation)","award":["10041045"],"award-info":[{"award-number":["10041045"]}]},{"name":"Innovate UK (UK Research and Innovation)","award":["1004418"],"award-info":[{"award-number":["1004418"]}]},{"name":"Dutch Cancer Society","award":["101057482"],"award-info":[{"award-number":["101057482"]}]},{"name":"Dutch Cancer Society","award":["10038931"],"award-info":[{"award-number":["10038931"]}]},{"name":"Dutch Cancer Society","award":["10041045"],"award-info":[{"award-number":["10041045"]}]},{"name":"Dutch Cancer Society","award":["1004418"],"award-info":[{"award-number":["1004418"]}]},{"name":"Dutch Ministry of Health, Welfare and Sport","award":["101057482"],"award-info":[{"award-number":["101057482"]}]},{"name":"Dutch Ministry of Health, Welfare and Sport","award":["10038931"],"award-info":[{"award-number":["10038931"]}]},{"name":"Dutch Ministry of Health, Welfare and Sport","award":["10041045"],"award-info":[{"award-number":["10041045"]}]},{"name":"Dutch Ministry of Health, Welfare and Sport","award":["1004418"],"award-info":[{"award-number":["1004418"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancers"],"abstract":"<jats:p>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 in order 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 databases. 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. Subsequently, the data were extracted using a predefined, tailored extraction framework. Results: In total, 17,301 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 outcome domains that were represented the most include mortality\/survival (43.1%), delivery of care (23.4%), outcomes relating to neoplasms (22.7%), and emotional functioning\/well-being (19.2%). Conclusions: This literature review provides a foundation for the development of an AYA-specific COS for improving 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 future research.<\/jats:p>","DOI":"10.3390\/cancers17030454","type":"journal-article","created":{"date-parts":[[2025,1,28]],"date-time":"2025-01-28T10:44:30Z","timestamp":1738061070000},"page":"454","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["Core Patient-Centered Outcomes for Adolescents and Young Adults with Cancer: A Comprehensive Review of the Literature from the STRONG-AYA Project"],"prefix":"10.3390","volume":"17","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1406-1739","authenticated-orcid":false,"given":"Silvie H. M.","family":"Janssen","sequence":"first","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"},{"name":"Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands"},{"name":"Department of Public Health, Erasmus MC Cancer Institute, Erasmus University Medical Center, Doctor Molewaterplein 40, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7549-3338","authenticated-orcid":false,"given":"Winette T. A.","family":"van der Graaf","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"},{"name":"Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8790-1247","authenticated-orcid":false,"given":"Anna","family":"Hurley-Wallace","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8885-6302","authenticated-orcid":false,"given":"Carla","family":"Vlooswijk","sequence":"additional","affiliation":[{"name":"Research and Development, Netherlands Comprehensive Cancer Organization, 3511 CV Utrecht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1821-3760","authenticated-orcid":false,"given":"Catarina S.","family":"Padilla","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"},{"name":"Department of Public Health, Erasmus MC Cancer Institute, Erasmus University Medical Center, Doctor Molewaterplein 40, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"Cairns","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9849-4074","authenticated-orcid":false,"given":"Connor J.","family":"Tyler","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emily I.","family":"Holthuis","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8538-7237","authenticated-orcid":false,"given":"Gudrun E.","family":"Rohde","sequence":"additional","affiliation":[{"name":"Department of Health and Nursing Science, Faculty of Health and Sport Sciences, University in Agder, 4604 Kristiansand, Norway"},{"name":"Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London W1T 7NF, UK"},{"name":"Department of Clinical Research, Sorlandet Hospital, 4615 Kristiansand, Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6173-7319","authenticated-orcid":false,"given":"Katherine J.","family":"Hunt","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kirsty","family":"Way","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-9663-6643","authenticated-orcid":false,"given":"Konstantinos","family":"Angoumis","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2147-0469","authenticated-orcid":false,"given":"Lina H.","family":"Lankhorst","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1774-7042","authenticated-orcid":false,"given":"Maarten F. M.","family":"Engel","sequence":"additional","affiliation":[{"name":"Medical Library, Erasmus MC, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5299-9165","authenticated-orcid":false,"given":"Maria-Sophie","family":"Rothmund","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, Psychotherapy, Psychosomatics, and Medical Psychology, University Hospital of Psychiatry II, Medical University of Innsbruck, 6020 Innsbruck, Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Milou J. P.","family":"Reuvers","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"},{"name":"Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1398-9105","authenticated-orcid":false,"given":"Nicole","family":"Colla\u00e7o","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1825-7587","authenticated-orcid":false,"given":"Richard","family":"Wagland","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8755-146X","authenticated-orcid":false,"given":"Samantha C.","family":"Sodergren","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simone","family":"Hanebaum","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thom","family":"Legendal","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-9365-3407","authenticated-orcid":false,"given":"Thomas J.","family":"Cartledge","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, Academic Geriatric Medicine, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tom I.","family":"Bootsma","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"},{"name":"Department of Public Health, Erasmus MC Cancer Institute, Erasmus University Medical Center, Doctor Molewaterplein 40, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yushi","family":"Bai","sequence":"additional","affiliation":[{"name":"Division of Psychology and Mental Health, Faculty of Biology, Medicine and Health, University of Manchester, Manchester M13 9PL, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne-Sophie","family":"Darlington","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1387-8686","authenticated-orcid":false,"given":"Olga","family":"Husson","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands"},{"name":"Department of Public Health, Erasmus MC Cancer Institute, Erasmus University Medical Center, Doctor Molewaterplein 40, 3015 GD Rotterdam, The Netherlands"},{"name":"Department of Surgical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Doctor Molewaterplein 40, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2025,1,28]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","unstructured":"Janssen, S.H., van der Graaf, W.T., van der Meer, D.J., Manten-Horst, E., and Husson, O. 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