Unmet support service needs and health-related quality of life among adolescents and young adults with cancer

The AYA HOPE study

Ashley Wilder Smith, Helen M. Parsons, Erin E. Kent, Keith Bellizzi, Brad J. Zebrack, Gretchen Keel, Charles F. Lynch, Mara B. Rubenstein, Theresa H Keegan, Rosemary D Cress, Gretchen Agha, Mark Cruz, Stephen M. Schwartz, Martha Shellenberger, Tiffany Janes, Ikuko Kato, Ann Bankowski, Marjorie Stock, Xiao Cheng Wu, Vivien Chen & 16 others Bradley Tompkins, Theresa Keegan, Laura Allen, Zinnia Loya, Karen Hussain, Michele M. West, Lori A. Odle, Ann Hamilton, Jennifer Zelaya, Mary Lo, Urduja Trinidad, Linda C. Harlan, Jana Eisenstein, Arnold Potosky, Karen Albritton, Michael Link

Research output: Contribution to journalArticle

71 Citations (Scopus)

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 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.

Original languageEnglish (US)
Article numberArticle 00075
JournalFrontiers in Oncology
Volume3 APR
DOIs
StatePublished - 2013
Externally publishedYes

Fingerprint

Young Adult
Quality of Life
Neoplasms
Mental Health Services
Linear Models
Mental Health
National Cancer Institute (U.S.)
Self-Help Groups
Occupational Therapy
Pain Management
Health Insurance
Research
Fatigue
Demography
Health
Population

Keywords

  • Adolescent
  • Cancer
  • Health-related quality of life
  • Support service needs
  • Young adult oncology

ASJC Scopus subject areas

  • Cancer Research
  • Oncology

Cite this

Smith, A. W., Parsons, H. M., Kent, E. E., Bellizzi, K., Zebrack, B. J., Keel, G., ... Link, M. (2013). Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: The AYA HOPE study. Frontiers in Oncology, 3 APR, [Article 00075]. https://doi.org/10.3389/fonc.2013.00075

Unmet support service needs and health-related quality of life among adolescents and young adults with cancer : The AYA HOPE study. / Smith, Ashley Wilder; Parsons, Helen M.; Kent, Erin E.; Bellizzi, Keith; Zebrack, Brad J.; Keel, Gretchen; Lynch, Charles F.; Rubenstein, Mara B.; Keegan, Theresa H; Cress, Rosemary D; Agha, Gretchen; Cruz, Mark; Schwartz, Stephen M.; Shellenberger, Martha; Janes, Tiffany; Kato, Ikuko; Bankowski, Ann; Stock, Marjorie; Wu, Xiao Cheng; Chen, Vivien; Tompkins, Bradley; Keegan, Theresa; Allen, Laura; Loya, Zinnia; Hussain, Karen; West, Michele M.; Odle, Lori A.; Hamilton, Ann; Zelaya, Jennifer; Lo, Mary; Trinidad, Urduja; Harlan, Linda C.; Eisenstein, Jana; Potosky, Arnold; Albritton, Karen; Link, Michael.

In: Frontiers in Oncology, Vol. 3 APR, Article 00075, 2013.

Research output: Contribution to journalArticle

Smith, AW, Parsons, HM, Kent, EE, Bellizzi, K, Zebrack, BJ, Keel, G, Lynch, CF, Rubenstein, MB, Keegan, TH, Cress, RD, Agha, G, Cruz, M, Schwartz, SM, Shellenberger, M, Janes, T, Kato, I, Bankowski, A, Stock, M, Wu, XC, Chen, V, Tompkins, B, Keegan, T, Allen, L, Loya, Z, Hussain, K, West, MM, Odle, LA, Hamilton, A, Zelaya, J, Lo, M, Trinidad, U, Harlan, LC, Eisenstein, J, Potosky, A, Albritton, K & Link, M 2013, 'Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: The AYA HOPE study', Frontiers in Oncology, vol. 3 APR, Article 00075. https://doi.org/10.3389/fonc.2013.00075
Smith, Ashley Wilder ; Parsons, Helen M. ; Kent, Erin E. ; Bellizzi, Keith ; Zebrack, Brad J. ; Keel, Gretchen ; Lynch, Charles F. ; Rubenstein, Mara B. ; Keegan, Theresa H ; Cress, Rosemary D ; Agha, Gretchen ; Cruz, Mark ; Schwartz, Stephen M. ; Shellenberger, Martha ; Janes, Tiffany ; Kato, Ikuko ; Bankowski, Ann ; Stock, Marjorie ; Wu, Xiao Cheng ; Chen, Vivien ; Tompkins, Bradley ; Keegan, Theresa ; Allen, Laura ; Loya, Zinnia ; Hussain, Karen ; West, Michele M. ; Odle, Lori A. ; Hamilton, Ann ; Zelaya, Jennifer ; Lo, Mary ; Trinidad, Urduja ; Harlan, Linda C. ; Eisenstein, Jana ; Potosky, Arnold ; Albritton, Karen ; Link, Michael. / Unmet support service needs and health-related quality of life among adolescents and young adults with cancer : The AYA HOPE study. In: Frontiers in Oncology. 2013 ; Vol. 3 APR.
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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 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.",
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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

AU - Cress, Rosemary D

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

Y1 - 2013

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.

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KW - Cancer

KW - Health-related quality of life

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KW - Young adult oncology

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