Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study
Open accessAbstract
Purpose We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs.Methods We studied 523 AYAs recruited from seven population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin's lymphoma, non-Hodgkin's lymphoma, germ cell cancer, or sarcoma in 2007-2008. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors.Results More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29 % for in-home nursing to 75 % for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-white race/ethnicity, and participants who reported less than excellent general health or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥3 physical treatment-related symptoms.Conclusions Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors.Implications for cancer survivors We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.
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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 [4]
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Experimental — accuracy not yet measuredYoung adult cancer survivors report significant unmet symptom management needs.
“YA report significant unmet symptom management needs [4, 15, 16]”
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 [4]
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- Authors
- and the AYA HOPE Study Collaborative Group, Keegan, T. H. M., Lichtensztajn, D. Y., Kato, I., Kent, E. E., Wu, X.-C., West, M. M., Hamilton, A. S., Zebrack, B., Bellizzi, K. M., & Smith, A. W.
- Affiliations
- Cancer Prevention Institute of California (US)
- National Institutes of Health (US)
- University of Iowa (US)
- University of Southern California (US)
- University of Connecticut (US)
- Corresponding author
- Keegan, Theresa H. M.
- ORCID
- Venue
- Journal of Cancer Survivorship
- Published
- 2012-03-29
- Volume
- 6
- Issue
- 3
- Pages
- 239-250
- ISSN
- 1932-2259 (ISSN-L)
- 1932-2267
- PMC
- PMC3433596
- OpenAlex
- W1995485625
- Cited by
- 347
- References
- 29
- Citations by year
- 2026: 19 · 2025: 24 · 2024: 20 · 2023: 22 · 2022: 33 · 2021: 37 · 2020: 26 · 2019: 27 · 2018: 31 · 2017: 25 · 2016: 40 · 2015: 18 · 2014: 11 · 2013: 13 · 2012: 1
- FWCI
- 12.06
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of Cancer Survivorship (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (n01pc35143-20-0-1, n01pc54404-13-0-4, n01pc35139-25-0-11, n01pc35142-19-0-0, n01pc54402-13-0-6, n01pc35145-19-0-7, n01pc35136-24-0-2)
- National Cancer Institute (N01 PC035145, N01 PC054402, N01 PC035143, N01 PC054404, N01 PC035139, N01 PC035136, N01 PC035142)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- adolescent and young adult cancer survivors, unmet information needs, unmet service needs, survivorship care, acute lymphoblastic leukemia, Hodgkin's disease, non-Hodgkin lymphoma, germ cell tumors, sarcoma, support groups, pain management, mental health services, financial advice, quality of care, sociodemographic disparities, treatment-related symptoms
- MeSH terms
- Adolescent, Adult, Female, Health Services Accessibility, Health Services Needs and Demand, Humans, Information Services, Male, Neoplasms, Quality of Life, Surveys and Questionnaires, Registries, Survivors, Health Care Surveys, Needs Assessment, Young Adult
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