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Identifying and Addressing the Needs of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine Workshop
Open accessAbstract
Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research.
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“The National Cancer Policy Forum and National Cancer Institute have highlighted the critical need to assist patients with reducing symptom burden and promoting self-management of symptoms [12, 13].”
From Improving symptom management for survivors of young adult cancer: rationale and study protocol for a pilot randomized controlled trial (2024) · cites this paper as [12]
Experimental — accuracy not yet measuredThe source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
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“For many YA cancer survivors, the impact of treatment is significant and long-lasting, including difficult physical symptoms (e.g., pain, fatigue) [4–6], psychological distress [6–10], and an increased risk of long-term health problems (e.g., second cancers, early-onset cardiovascular disease) [11–13].”
From Improving symptom management for survivors of young adult cancer: rationale and study protocol for a pilot randomized controlled trial (2024) · cites this paper as [12]
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“YA cancer survivors are one of the least represented groups in clinical research [94, 95].”
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Poh, Y. K., Wong, S. Y., Goh, D. L., Ke, Y., & Wong, V. H. M. (2025) · Journal of Adolescent and Young Adult Oncology · doi:10.1177/21565333251386711
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Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940885
Dorfman, C. S., Shelby, R. A., Stalls, J. M., Thomas, S. M., Arrato, N. A., Herold, B., Somers, T. J., Keefe, F. J., Winger, J. G., Vilardaga, J. P., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26731420
Self-citationReinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940909
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940912
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940903
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940882
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940915
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940894
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940900
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940897
Reinert, C., Gerken, M., Rathberger, K., Krueger, K., Klinkhammer‐Schalke, M., Lindberg, P., Koelbl, O., Proescholdt, M. A., Riemenschneider, M. J., Pukrop, T., et al. (2020) · Figshare · doi:10.6084/m9.figshare.12940891
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Metadata
- Authors
- Nass, S. J., Beaupin, L. K., Demark-Wahnefried, W., Fasciano, K., Ganz, P. A., Hayes-Lattin, B., Hudson, M. M., Nevidjon, B., Oeffinger, K. C., Rechis, R., Richardson, L. C., Seibel, N. L., & Smith, A. W.
- Affiliations
- National Academy of Medicine (US)
- Roswell Park Comprehensive Cancer Center (US)
- University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, Alabama, USA;
- Harvard University (US)
- University of California, Los Angeles (US)
- Oregon Health & Science University Knight Cancer Institute, Portland, Oregon, USA;
- St. Jude Children's Research Hospital (US)
- Oncology Nursing Society (US)
- Memorial Sloan Kettering Cancer Center (US)
- Livestrong Foundation (US)
- Centers for Disease Control and Prevention (US)
- National Institutes of Health (US)
- Corresponding author
- Nass, Sharyl J.
- ORCID
- Venue
- The Oncologist
- Publisher
- Oxford University Press (OUP)
- Published
- 2015-01-07
- Volume
- 20
- Issue
- 2
- Pages
- 186-195
- ISSN
- 1083-7159 (ISSN-L)
- 1549-490X
- PMC
- PMC4319626
- OpenAlex
- W2106134680
- Cited by
- 311
- References
- 80
- Citations by year
- 2026: 14 · 2025: 26 · 2024: 21 · 2023: 28 · 2022: 25 · 2021: 27 · 2020: 40 · 2019: 27 · 2018: 34 · 2017: 33 · 2016: 28 · 2015: 6
- FWCI
- 5.10
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model (vor)
- Locations
- The Oncologist (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- eScholarship (California Digital Library) (submittedVersion)
- Funders
- Centers for Disease Control and Prevention
- National Cancer Institute
- Association of American Cancer Institutes
- American Association for Cancer Research
- American Cancer Society
- American Society of Clinical Oncology
- American Society of Hematology
- American Society for Radiation Oncology
- AstraZeneca
- Bristol-Myers Squibb
- C-Change
- Cancer Support Community
- CEO Roundtable on Cancer
- EMD Serono
- Helsinn Group
- LIVESTRONG Foundation
- National Comprehensive Cancer Network
- Novartis Oncology
- Oncology Nursing Society
- Sanofi Oncology
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Adolescent and Pediatric Healthcare
- Keywords
- adolescent and young adult cancer, survivorship care, psychosocial needs, health care disparities, access to cancer care, provider education, research participation, long-term effects of cancer treatment
- MeSH terms
- Adolescent, Adult, Humans, Neoplasms, United States, National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division, Survivors, Young Adult
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