Cited by 349Childhood Cancer Survivors' Quality of LifeCancer survivorship and careFamily Support in Illness

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Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study

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and the AYA HOPE Study Collaborative Group, Keegan, Theresa H. M., Lichtensztajn, Daphne Y., Kato, Ikuko, Kent, Erin E., Wu, Xiao-Cheng, West, Michelle M., Hamilton, Ann S., Zebrack, Brad, Bellizzi, Keith M., Smith, Ashley W.·2012·Journal of Cancer Survivorship

DOI 10.1007/s11764-012-0219-9PMC PMC3433596

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Abstract

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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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: Keegan, Theresa H. M.
Lichtensztajn, Daphne Y.
Kato, Ikuko
Kent, Erin E.
Wu, Xiao-Cheng
Hamilton, Ann S.
Zebrack, Brad
Bellizzi, Keith M.
Smith, Ashley W.
Venue: Journal of Cancer Survivorship
Publisher: Springer Science and Business Media LLC
Published: 2012-03-29
Volume: 6
Issue: 3
Pages: 239-250
ISSN: 1932-2259 (ISSN-L)
1932-2267
DOI: 10.1007/s11764-012-0219-9
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 › Psychology › Clinical Psychology › 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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Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study

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