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Review
. 2019 Jan;66(1):e27486.
doi: 10.1002/pbc.27486. Epub 2018 Oct 7.

Understanding care and outcomes in adolescents and young adult with Cancer: A review of the AYA HOPE study

Ashley Wilder Smith  1 , Theresa Keegan  2 , Ann Hamilton  3 , Charles Lynch  4 , Xiao-Cheng Wu  5 , Stephen M Schwartz  6 , Ikuko Kato  7 , Rosemary Cress  8 , Linda Harlan  9 ; AYA HOPE Study Collaborative Group  1
Affiliations
Review

Understanding care and outcomes in adolescents and young adult with Cancer: A review of the AYA HOPE study

Ashley Wilder Smith et al. Pediatr Blood Cancer. 2019 Jan.

Abstract

Historically, adolescents and young adults (AYA) diagnosed with cancer have been an understudied population, and their unique care experiences, needs, and outcomes were not well understood. Thus, 10 years ago, the National Cancer Institute supported the fielding of the Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) study to address this gap. We recruited individuals diagnosed at ages 15 to 39 with germ cell, Hodgkin and non-Hodgkin lymphoma, acute lymphoblastic leukemia, and sarcoma from Surveillance, Epidemiology, and End Results cancer registries into the first multicenter population-based study of medical care, physical, and mental health outcomes for AYAs with cancer in the United States. This review of the 17 published manuscripts showed low awareness of clinical trials and substantial impact of cancer on financial burden, education and work, relationships and family planning, and physical and mental health. It highlights the feasibility of a longitudinal population-based study and key lessons learned for research on AYAs with cancer in and beyond the United States.

Keywords: adolescent; cancer care; health outcomes; quality of life; young adult.

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Conflict of interest statement

CONFLICTS OF INTEREST

The authors have no conflict of interest to report. The findings and conclusions in this paper are those of the authors and do not necessarily represent the official position of the National Cancer Institute, the National Institutes of Health, or the US Department of Health and Human Services.

Figures

FIGURE 1
FIGURE 1
Recruitment flow diagram of AYA HOPE. Reprinted with permission from Journal of Cancer Survivorship.
FIGURE 2
FIGURE 2
Coverage of doctor-recommended cancer tests/treatment (n = 465). The percentage of participants who indicated that there were doctor-recommended tests or treatments not covered by their insurance in the baseline survey as well as whether they received the test/treatments regardless of insurance coverage. Reprinted with permission from Cancer
See this image and copyright information in PMC

References

    1. Adolescent and Young Adult Oncology Progress Review Group. Closing the gap: research and care imperatives for adolescents and young adults with cancer (NIH Publication No. 06–6067). Bethesda, MD: 2006. August Report nr NIH Publication No. 06–6067. 108 p.
    1. National Cancer Institute. 2015 January 24, 2018. Adolescents and young adults with cancer. <https://www.cancer.gov/types/aya>. Accessed 2018 January 24, 2018.
    1. National Cancer Institute. 2018 January 24. Healthcare delivery research program. https://healthcaredelivery.cancer.gov/. Accessed 2018 January 24.
    1. Saloustros E, Stark DP, Michailidou K, et al. The care of adolescents and young adults with cancer: results of the ESMO/SIOPE survey. ESMO Open. 2017; 2: e000252. - PMC - PubMed
    1. Harlan LC, Lynch CF, Keegan TH, et al. Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE study. J Cancer Surviv. 2011;5:305–314. - PMC - PubMed

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