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Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature

Publication: Journal of Clinical Oncology

Abstract

Access to care remains a persistent challenge for adolescents and young adults (AYAs) with cancer. We review key findings in the science to date. (1) Location of care matters. There is survival benefit for AYAs treated either at a pediatric center or site with special status (eg, Children's Oncology Group, National Cancer Institute [NCI]–designated Comprehensive Cancer Center). (2) Socioeconomic status and insurance require further investigation. Medicaid expansion has had a moderate effect on AYA outcomes. The dependent care expansion benefit has come largely from improvements in coverage for younger populations whose parents have insurance, while some subgroups likely still face insurance gaps. (3) Clinical trial enrollment remains poor, but access may be improving. Numerous barriers and facilitators of clinical trial enrollment include those that are system level and patient level. NCI has established several initiatives over the past decade to improve enrollment, and newer collaboratives have recently brought together multidisciplinary US teams to increase clinical trial enrollment. (4) Effective AYA programs require provider and system flexibility and program reflection. With flexibility comes a need for metrics to assess program effectiveness in the context of the program model. Centers treating AYAs with cancer could submit a subset of metrics (appropriate to their program and/or services) to maintain their status; persistence would require an entity with staying power committed to overseeing the metrics and the system. Substantial clinical and biological advances are anticipated over the next 20 years that will benefit all patients with cancer. In parallel, it is crucial to prioritize research regarding access to health care and cancer care delivery; only with equitable access to care for AYAs can they, too, benefit from these advances.

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Information

Published In

Journal of Clinical Oncology
Pages: 642 - 652
PubMed: 37939320

History

Published online: November 08, 2023
Published in print: February 20, 2024

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Affiliations

Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT
Cancer Control and Population Sciences, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT
Cancer Control and Population Sciences, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT
Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina, Chapel Hill, NC
Cancer Control and Population Sciences, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT
Julie A. Wolfson, MD, MSHS https://orcid.org/0000-0002-3711-2239
Division of Pediatric Hematology-Oncology, University of Alabama at Birmingham, Birmingham, AL
Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL

Notes

Anne C. Kirchhoff, PhD, Huntsman Cancer Institute, 2000 Circle of Hope, Salt Lake City, UT 84112; e-mail: [email protected].

Author Contributions

Conception and design: Anne C. Kirchhoff, Julie Wolfson
Administrative support: Anne C. Kirchhoff
Collection and assembly of data: All authors
Data analysis and interpretation: Anne C. Kirchhoff, Austin R. Waters, Julie Wolfson
Manuscript writing: All authors
Final approval of manuscript: All authors
Accountable for all aspects of the work: All authors

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Anne C. Kirchhoff, Austin R. Waters, Amy Chevrier, Julie A. Wolfson
Journal of Clinical Oncology 2024 42:6, 642-652

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