Cited by 214Childhood Cancer Survivors' Quality of LifeCancer survivorship and careFamily Support in Illness

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Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: the AYA HOPE study

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Smith, Ashley·2013·Frontiers in Oncology

DOI 10.3389/fonc.2013.00075PMC PMC3619248

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Abstract

INTRODUCTION: Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL). METHODS: We examined unmet service needs and HRQOL in the National Cancer Institute's Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15-39, diagnosed with cancer 6-14 months prior, in 2007-2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables. RESULTS: Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p's < 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p's < 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains. DISCUSSION: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services.

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“unmet needs reported by adolescents and young adults with cancer.(15) Despite the unique challenges and needs of adolescents and young adults, age-appropriate psychosocial interventions are lacking.”
Background
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Authors: Smith, A.
Affiliations: National Institutes of Health (US)
Corresponding author: Smith, Ashley
ORCID: Smith, Ashley
Venue: Frontiers in Oncology
Publisher: Frontiers Media SA
Published: 2013
Volume: 3
Pages: 75-75
ISSN: 2234-943X (ISSN-L)
DOI: 10.3389/fonc.2013.00075
PMC: PMC3619248
OpenAlex: W2142418913
Cited by: 214
References: 45
Citations by year: 2026: 14 · 2025: 13 · 2024: 16 · 2023: 30 · 2022: 27 · 2021: 21 · 2020: 9 · 2019: 14 · 2018: 15 · 2017: 16 · 2016: 15 · 2015: 16 · 2014: 5 · 2013: 3
FWCI: 12.14
Type: journal article
Language: en
Open access: gold
doi.org
Licence: cc-by
Locations: Frontiers in Oncology (publishedVersion, cc-by)
Europe PMC (PubMed Central) (publishedVersion, cc-by)
PubMed Central (publishedVersion, cc-by)
PubMed (publishedVersion)
DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
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, health-related quality of life, psychosocial support, financial services, mental health services, support groups, pain management, physiotherapy, occupational therapy, fatigue, functioning

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Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: the AYA HOPE study

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