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.M. Keegan, Rosemary Cress, Gretchen Agha, Mark Cruz, Stephen M. Schwartz, Martha Shellenberger, Tiffany Janes, Ikuko Kato, Ann Bankowski, Marjorie Stock, Xiao Cheng Wu, Vivien ChenBradley 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 journalArticlepeer-review

82 Scopus citations

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

Keywords

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

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

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