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

Ashley Wilder Smith; Theresa Keegan; Ann Hamilton; Charles Lynch; Xiao-Cheng Wu; Stephen M Schwartz; Ikuko Kato; Rosemary Cress; Linda Harlan; AYA HOPE Study Collaborative Group

doi:10.1002/pbc.27486

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

Journal article

Peer reviewed

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

Ashley Wilder Smith, Theresa Keegan, Ann Hamilton, Charles Lynch, Xiao-Cheng Wu, Stephen M Schwartz, Ikuko Kato, Rosemary Cress, Linda Harlan and AYA HOPE Study Collaborative Group

Pediatric blood & cancer, Vol.66(1), pp.e27486-e27486

01/2019

DOI: 10.1002/pbc.27486

PMCID: PMC7239374

PMID: 30294882

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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.

SEER Program

Humans

Psychotherapy

Male

Treatment Outcome

Neoplasms - psychology

Insurance Coverage

Young Adult

Health Services Needs and Demand

Neoplasms - therapy

Adolescent

Quality of Life

Adult

Registries

Survivors - psychology

Adaptation, Psychological

Needs Assessment

Details

Title: Subtitle: Understanding care and outcomes in adolescents and young adult with Cancer: A review of the AYA HOPE study
Creators: Ashley Wilder Smith - Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Science, National Cancer Institute, Rockville, Maryland
Theresa Keegan - UC Davis Comprehensive Cancer Center, Sacramento, California
Ann Hamilton - Keck School of Medicine of USC, Los Angeles, California
Charles Lynch - University of Iowa, Iowa City, Iowa
Xiao-Cheng Wu - LSU Health Sciences Center School of Public Health, New Orleans, Louisiana
Stephen M Schwartz - Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, Washington
Ikuko Kato - Wayne State University, Detroit, Michigan
Rosemary Cress - Cancer Registry of Greater California, Sacramento, California
Linda Harlan - Special Volunteer, National Cancer Institute, Rockville, Maryland
AYA HOPE Study Collaborative Group
Resource Type: Journal article
Publication Details: Pediatric blood & cancer, Vol.66(1), pp.e27486-e27486
DOI: 10.1002/pbc.27486
PMID: 30294882
PMCID: PMC7239374
NLM abbreviation: Pediatr Blood Cancer
ISSN: 1545-5009
eISSN: 1545-5017
Publisher: United States
Grant note: N01PC-2010-00029 / NCI NIH HHS N01PC-2010-00028 / NCI NIH HHS Z99 CA999999 / Intramural NIH HHS N01PC-2010-00030 / NCI NIH HHS N01PC-2010-00032 / NCI NIH HHS N01PC-2010-00034 / NCI NIH HHS N01PC-2010-00035 / NCI NIH HHS N01PC-2010-00140 / NCI NIH HHS P30 CA086862 / NCI NIH HHS
Language: English
Date published: 01/2019
Academic Unit: Epidemiology
Record Identifier: 9983995042402771

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