“Cancer Sucks,” and Other Ponderings by Adolescent and Young Adult Cancer Survivors

Abstract

As part of the National Cancer Institute's AYA HOPE study, 296 adolescent and young adults (AYAs) completed an open-ended survey item asking them to describe their medical care or experience with cancer. Patient, provider, and system-level characteristics all appear to influence AYAs’ perceptions of their medical care. Participants attributed levels of satisfaction with care to the availability and communication of information, the management of side-effects, and the expediency and flexibility of treatments. Struggles with health insurance and finances were evident. Findings contribute to a better understanding of AYAs’ cancer treatment experiences and will inform improvements to oncology care for this population.

KEYWORDS:

• adolescent
• young adult
• medical care
• qualitative research
• psychosocial

Notes

1. Rosemary Cress, Gretchen Agha, Mark Cruz, Stephen Schwartz, Martha Shellenberger, Tiffany Janes, Ikuko Kato, Ann Bankowski, Marjorie Stock, Xiao-cheng Wu, Vivien Chen, Bradley Tompkins, Theresa Keegan, Laura Allen, Zinnia Loya, Karen Hussain, Charles Lynch, Michele West, Lori Odle, Ann Hamilton, Jennifer Zelaya, Mary Lo, Urduja Trinidad, Linda Harlan, Ashley Wilder Smith, Jana Eisenstein, Gretchen Keel, Arnold Potosky, Keith Bellizzi, Karen Albritton, Debra Friedman, Michael Link, and Brad Zebrack.