Understanding young adults’ experiences with cancer

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The 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. A new project, led in part by Kaiser Permanente Washington Health Research Institute (KPWHRI), aims to address this gap. The “Valuing Opinions and Insight from Cancer Experiences” (VOICE) study seeks to better understand experiences with AYA cancers and generate evidence to support patient-centered care for survivors of these cancers.

“In early adulthood, people may be going through major life transitions, like moving out of a childhood home, finishing their education, seeking employment and establishing a career, building adult relationships, and having children. Cancer can be a major disrupter,” explains Jessica Chubak, PhD, a KPWHRI senior investigator. “It’s important to learn more about the challenges these survivors experience in order to improve these young adults’ health and health care.”

The study has received a 5-year $10.3 million grant from the National Cancer Institute that brings together a team of researchers from 11 institutions with a broad range of expertise. To inform the study overall, KPWHRI Assistant Investigator Marlaine Figueroa Gray, PhD, and team are conducting qualitative interviews with AYA participants nationally. The qualitative research is being conducted in partnership with the Cactus Cancer Society (formerly Lacuna Loft), founded by Mallory Casperson, MS, who is a co-investigator on the study. The interviews are asking participants to describe what good cancer care for AYAs looks like to them, with a focus on fertility and family building, survivorship care, late effects, and the impact of cancer on life goals and relationships.

A comprehensive survey, led by Chubak, aims to reach 5,000 AYA cancer survivors from Kaiser Permanente Northern California (KPNC) and Southern California (KPSC), and the state of North Carolina. The survey will launch in 2022 and will focus on experiences with health and medical care, cancer treatment, life experiences, social support, sexual health, and general lifestyle.

The study team will also look at electronic health records and insurance claims of AYA cancer survivors, which will include people from California, North Carolina, and Utah state cancer registries, and members of KPNC and KPSC. 

The 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, thyroid, melanoma, testicular, cervical, non-Hodgkin lymphoma, sarcoma, Hodgkin lymphoma, colorectal, and leukemia.

One of the projects — led by Karen Wernli, PhD, a KPWHRI associate investigator, with Erin Hahn, PhD, MPH, of KP Southern California, and Neetu Chawla, PhD, MPH, of the Department of Veterans Affairs (VA) Greater Los Angeles — is looking at survivorship care 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.

“There can be many reasons for gaps in care — such as lack of care coordination between different services, a community that is mobile, and changing insurance and institutions of care,” says Wernli. “Through our research, we hope to identify opportunities to improve survivorship care so that AYAs have a great start in their long-term health care.”

The other 2 projects under the VOICE study focus on how fertility concerns and use of reproductive services affect cancer treatment, and on medical conditions and late effects of cancers. The studies are led by Hazel Nichols, PhD (University of North Carolina), Kathryn Ruddy, MD (Mayo Clinic), Theresa Keegan, PhD, MS (University of California, Davis), and Larry Kushi, ScD (KPNC).

The overarching goal of this collaboration, say Chubak and Wernli, 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. The VOICE study results will be shared through the course of the project, which concludes in 2025.

The VOICE study’s Multiple Principal Investigators are: Larry Kushi (KPNC), Hazel Nichols (UNC), Theresa Keegan (UC Davis), Erin Hahn (KPSC), Jessica Chubak (KPWA). The KPWA study team includes: Jessica Chubak, Monica Fujii, Karen Wernli, Marlaine Figueroa Gray, Ellen O’Meara, Paula Sandler and the Survey Research Program, Brandie Sevey, Caitlin Dorsey, Renee Parisio, Sarah Nielson, Stephen Perry, Sarah Randall, and Lily Shapiro.

By Caroline Liou