Original Research ARTICLE

Front. Oncol., 08 April 2013 | http://dx.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

  • 1Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA
  • 2Department of Epidemiology and Biostatistics, School of Medicine, The University of Texas Health Science Center, San Antonio, TX, USA
  • 3Human Development and Family Studies, University of Connecticut, Storrs, CT, USA
  • 4University of Michigan School of Social Work, Ann Arbor, MI, USA
  • 5Information Management Services, Rockville, MD, USA
  • 6Department of Epidemiology, The University of Iowa, Iowa City, IA, USA
  • 7Children’s Hospital of Michigan, Detroit, MI, USA
  • 8Cancer Prevention Institute of California, Fremont, CA, USA

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.

Keywords: support service needs, health-related quality of life, adolescent, young adult oncology, cancer

Citation: Smith AW, Parsons HM, Kent EE, Bellizzi K, Zebrack BJ, Keel G, Lynch CF, Rubenstein MB, Keegan THM and AYA HOPE Study Collaborative Group (2013) Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: the AYA HOPE study. Front. Oncol. 3:75. doi: 10.3389/fonc.2013.00075

Received: 31 December 2012; Accepted: 23 March 2013;
Published online: 08 April 2013.

Edited by:

Crystal Mackall, National Cancer Institute, USA

Reviewed by:

Melinda Merchant, National Cancer Institute, USA
David A. Rodeberg, East Carolina University Brody School of Medicine, USA

Copyright: © 2013 Smith, Parsons, Kent, Bellizzi, Zebrack, Keel, Lynch, Rubenstein, Keegan and AYA HOPE Study Collaborative Group. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in other forums, provided the original authors and source are credited and subject to any copyright notices concerning any third-party graphics etc.

*Correspondence: Ashley Wilder Smith, Outcomes Research Branch, National Cancer Institute, 6130 Executive Boulevard, MSC 7344, Executive Plaza North, Room 4090, Bethesda, MD 20892-7344, USA. e-mail: smithas@mail.nih.gov

California Cancer Registry/Public Health Institute (Sacramento, CA): Rosemary Cress, DrPH (P.I.); Gretchen Agha; Mark Cruz
Fred Hutchinson Cancer Research Center (Seattle, WA): Stephen M. Schwartz, Ph.D. (P.I.); Martha Shellenberger; Tiffany Janes
Karmanos Cancer Center (Detroit, MI, USA): Ikuko Kato, Ph.D. (P.I.); Ann Bankowski; Marjorie Stock
Louisiana State University (New Orleans, LA, USA): Xiao-cheng Wu, M.D., MPH (P.I.); Vivien Chen; Bradley Tompkins
Cancer Prevention Institute of California (Fremont, CA, USA): Theresa Keegan, Ph.D, M.S. (P.I.); Laura Allen; Zinnia Loya; Karen Hussain
University of Iowa (Iowa City, IA, USA): Charles F. Lynch M.D., Ph.D. (P.I.); Michele M. West, Ph.D.; Lori A. Odle, R.N.
University of Southern California (Los Angeles, CA, USA): Ann Hamilton, Ph.D (P.I.); Jennifer Zelaya; Mary Lo; Urduja Trinidad
National Cancer Institute (Bethesda, MD, USA): Linda C. Harlan, BSN, MPH, Ph.D.; (Investigator) Ashley Wilder Smith, Ph.D., MPH (Investigator); Jana Eisenstein, MPH; Gretchen Keel, BS, BA.
Consultants: Arnold Potosky, Ph.D.; Keith Bellizzi, Ph.D.; Karen Albritton, MD, Michael Link, MD; Brad Zebrack, Ph.D., MSW.