TY - JOUR
T1 - Unmet support service needs and health-related quality of life among adolescents and young adults with cancer
T2 - The AYA HOPE study
AU - Smith, Ashley Wilder
AU - Parsons, Helen M.
AU - Kent, Erin E.
AU - Bellizzi, Keith
AU - Zebrack, Brad J.
AU - Keel, Gretchen
AU - Lynch, Charles F.
AU - Rubenstein, Mara B.
AU - Keegan, Theresa H.M.
AU - Cress, Rosemary
AU - Agha, Gretchen
AU - Cruz, Mark
AU - Schwartz, Stephen M.
AU - Shellenberger, Martha
AU - Janes, Tiffany
AU - Kato, Ikuko
AU - Bankowski, Ann
AU - Stock, Marjorie
AU - Wu, Xiao Cheng
AU - Chen, Vivien
AU - Tompkins, Bradley
AU - Keegan, Theresa
AU - Allen, Laura
AU - Loya, Zinnia
AU - Hussain, Karen
AU - West, Michele M.
AU - Odle, Lori A.
AU - Hamilton, Ann
AU - Zelaya, Jennifer
AU - Lo, Mary
AU - Trinidad, Urduja
AU - Harlan, Linda C.
AU - Eisenstein, Jana
AU - Potosky, Arnold
AU - Albritton, Karen
AU - Link, Michael
PY - 2013/1/1
Y1 - 2013/1/1
N2 - 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 best 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.
AB - 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 best 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.
KW - Adolescent
KW - Cancer
KW - Health-related quality of life
KW - Support service needs
KW - Young adult oncology
UR - http://www.scopus.com/inward/record.url?scp=84889607953&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84889607953&partnerID=8YFLogxK
U2 - 10.3389/fonc.2013.00075
DO - 10.3389/fonc.2013.00075
M3 - Article
AN - SCOPUS:84889607953
SN - 2234-943X
VL - 3
JO - Frontiers in Oncology
JF - Frontiers in Oncology
M1 - Article 00075
ER -
