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Cited by 311Childhood Cancer Survivors' Quality of LifeCancer survivorship and careAdolescent and Pediatric Healthcare

Identifying and Addressing the Needs of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine Workshop

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Nass, Sharyl J., Beaupin, Lynda K., Demark-Wahnefried, Wendy, Fasciano, Karen, Ganz, Patricia A., Hayes-Lattin, Brandon, Hudson, Melissa M., Nevidjon, Brenda +5 more·2015·The Oncologist
DOI 10.1634/theoncologist.2014-0265PMC PMC4319626
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Abstract

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.

    “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]

    The CME section says AYA patients’ palliative-care needs should be revisited and targeted to symptom management, including coping skills and pain management. But the Introduction describes the NCI workshop as focused primarily on epidemiology, biology, and clinical trial enrollment; our copy does not say that the NCI highlighted symptom self-management, or explicitly recommend patient self-management of symptoms. (LLM, conf=0.84)

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  • For many young adult cancer survivors, the impact of treatment is significant and long-lasting, including physical symptoms such as pain and fatigue, psychological distress, and increased risk of long-term health problems such as second cancers and early-onset cardiovascular disease.

    “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]

    Split into 2 atoms — 1 confirmed, 1 partially supported, 0 disputed, 0 misattributed, 0 unverifiable. Expand the claim to see per-atom verdicts.

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  • YA cancer survivors are one of the least represented groups in clinical research.

    “YA cancer survivors are one of the least represented groups in clinical research [94, 95].”

    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 [94]

    The Further Research section says adolescents and young adults with cancer have traditionally had low clinical-trial participation, reporting approximately 14% enrollment versus 60% for pediatric patients. That supports underrepresentation in trials, but the figures concern patients rather than young adult survivors specifically and do not establish that survivors are among the least represented groups across clinical research. (LLM, conf=0.84)

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Research works printed but not linked: 7

  1. Rechis R, Bann C, Arvey S et al. Unique Risks & Vulnerabilities of AYA Patients across the Lifespan, LIVESTRONG Foundation: AYA Survey Results. Presented at Institute of Medicine National Cancer Policy Forum/LIVESTRONG Workshop on Address- ing the Needs of Adolescents and Young Adults with Cancer, Washington, D.C., 2013. Available at http:// www.iom.edu/~/media/Files/Activity%20Files/ Disease/NCPF/2013-JUL-15/2A_Rechis.pdf. Ac- cessed September 10, 2013.
  2. American Medical Association. AMA Adopts New Policies on First Day of Voting at Annual Meeting. June 17, 2013. Available at http://www. ama-assn.org/ama/pub/news/news/2013/2013- 06-17-new-ama-policies-annual-meeting.page. Accessed September 20, 2013.
  3. Keros V, Hultenby K, Borgström B et al. Methods of cryopreservation of testicular tissue with viable spermatogonia in pre-pubertal boys www.TheOncologist.com ©AlphaMed Press 2015
  4. Nass, Beaupin, Demark-Wahnefried et al. 193 CME undergoing gonadotoxic cancer treatment. Hum Reprod 2007;22:1384-1395.
  5. Washington, D.C.: The National Academies Press, 2013.
  6. Childhood Cancer Survivorship IOM. Improv- ing Care and Quality of Life. Washington, D.C.: The National Academies Press, 2003.
  7. Block R. 2013. AYA specific programs. Pre- sentation to the Institute of Medicine National Cancer Policy Forum/LIVESTRONG Workshop on Addressing the Needs of Adolescents and Young Adults with Cancer, July 15-16, 2013, Washington, D.C. http://www.iom.edu/~/media/Files/Activity% 20Files/Disease/NCPF/2013-JUL-15/4D_Block. pdf. Accessed September 10, 2013.

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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
DOI
10.1634/theoncologist.2014-0265
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 · 2013: 1
FWCI
5.10
Type
journal article
Language
en
Open access
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 › Health Professions › Speech and Hearing › 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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