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的 VOICE study aims to improve the health and health care of people who had cancer as adolescents and young adults

Adolescent and young adults (AYAs) diagnosed with cancer between the ages of 15 and 39 years old have received less attention from researchers than those with childhood or later-life cancer. 一个新项目, led in part by 凯撒永久医疗机构华盛顿 Health 世界杯下注网站 Institute (KPWHRI), 旨在解决这一差距. 的 “Valuing Opinions and Insight from 癌症 Experiences” (VOICE) study seeks to better understand experiences with AYA cancers and generate evidence to support patient-centered care for survivors of these cancers.

在成年早期, people may be going through major life transitions, like moving out of a childhood home, 完成学业, seeking employment and establishing a career, 建立成人关系, 生孩子. 癌症 can be a major disrupter,” explains 杰西卡·丘巴克博士KPWHRI高级世界杯下注网站员. “It’s important to learn more about the challenges these survivors experience in order to improve these young adults’ health and health care.”

的 study has received a 5-year $10.3 million grant from the National 癌症 Institute that brings together a team of researchers from 11 institutions with a broad range of expertise. To inform the study overall, KPWHRI 助理世界杯下注网站员 玛兰·菲格罗亚·格雷博士, and team are conducting qualitative interviews with AYA participants nationally. 的 qualitative research is being conducted in partnership with the 仙人掌癌症协会 (formerly Lacuna Loft), founded by Mallory Casperson, MS, who is a co-investigator on the study. 的 interviews are asking participants to describe what good cancer care for AYAs looks like to them, with a focus on fertility and family building, 生存保险, 后遗症, and the impact of cancer on life goals and relationships.

全面调查, 以楚巴克为首, 目标是达到5,000 AYA cancer survivors from 2022世界杯下注网站 Northern California (KPNC) and Southern California (KPSC), and the state of 北卡罗莱纳. 的 survey will launch in 2022 and will focus on experiences with health and medical care, 癌症治疗, 生活经历, 社会支持, 性健康, 一般的生活方式.

的 study team will also look at electronic health records and insurance claims of AYA cancer survivors, which will include people from California, 北卡罗莱纳, and Utah state cancer registries, 以及KPNC和KPSC的成员. 

的 surveys and health records research will inform the 3 main projects under the VOICE study, which will focus on the 10 most common AYA cancers: breast, 甲状腺, 黑素瘤, 睾丸, 颈, 非霍奇金淋巴瘤, 肉瘤, 霍奇金淋巴瘤, 结直肠, 和白血病.

其中一个项目，由 凯伦Wernli博士, a KPWHRI associate investigator, 艾琳·哈恩, 博士学位, 英里每小时, KP南加州, 还有尼图·舒拉, 博士学位, 英里每小时, of the Department of Veterans Affairs (VA) Greater Los Angeles — is looking at 生存保险 within 2 to 5 years from cancer diagnosis. Wernli and co-leads aim to learn more about where AYA survivors are experiencing gaps in care.

“的re can be many reasons for gaps in care — such as lack of care coordination between different services, 一个可移动的社区, and changing insurance and institutions of care,Wernli说. “通过世界杯下注网站, we hope to identify opportunities to improve 生存保险 so that AYAs have a great start in their long-term health care.”

的 other 2 projects under the VOICE study focus on how fertility concerns and use of reproductive services affect 癌症治疗, and on medical conditions and 后遗症 of cancers. 的 studies are led by Hazel Nichols, 博士学位 (University of 北卡罗莱纳), 凯瑟琳红润, 医学博士(梅奥诊所), 特蕾莎基冈, 博士学位, 加州大学硕士, 戴维斯), 和拉里·库什, ScD (KPNC).

的 overarching goal of this collaboration, Chubak和Wernli说, is that the research will provide new knowledge that can directly improve the cancer care experience and outcomes for adolescent and young adults diagnosed with cancer. 的 VOICE study results will be 分享d through the course of the project, which concludes in 2025.

的 VOICE study’s Multiple Principal Investigators are: Larry Kushi (KPNC), 黑兹尔·尼科尔斯(北卡罗来纳大学), 特蕾莎·基根(加州大学戴维斯分校), 艾琳·哈恩(KPSC), 杰西卡·丘巴克(KPWA). 的 KPWA study team includes: Jessica Chubak, 莫妮卡藤井裕久, 凯伦Wernli, 玛兰·菲格罗亚·格雷, O ' meara艾伦, Paula Sandler and the 调查世界杯下注网站计划, Brandie Sevey, 凯特琳多西, 蕾妮Parisio, 莎拉·尼尔森, 斯蒂芬·佩里, 莎拉·兰德尔, 和莉莉·夏皮罗.

作者:Caroline Liou