Researchers study how adolescents and young adults are treated for cancer

By Walter Neary

A team of cancer survivors at MultiCare is determined to unravel why cancer survival rates are not improving as quickly for adolescents and young adults (AYAs) as they are for other age groups.

For people diagnosed with cancer between the ages of 15-39, “our rate of survival has not improved since the 1970s. That’s a problem. It needs to change,” said Becca Jacobsen, a MultiCare Licensed Independent Clinical Social Worker (LICSW) care manager.

Members of the MultiCare AYA research team suggest that there could be numerous root causes contributing to this discrepancy, including where AYAs are treated for their cancer and a lack of access to clinical trials.

The team published an article recently in the journal JCO Oncology Practice, analyzing the experience of care of AYAs treated at community or academic cancer centers across the United States.

One issue: many patients are treated by oncologists who lack expertise in the patient’s type of cancer. A distinctive spectrum of cancers strikes AYAs, including both cancers common in young children and cancers common in older adults. Often, the decision about whether to treat at a pediatric or adult cancer center depends on age and not diagnosis.  Therefore, the oncologist treating an AYAs may not have much expertise in the AYA’s specific type of cancer.

Also, the oncology team may or may not have specific expertise in caring for people in the AYA age group.  Most patients in pediatric cancer centers are under age 15, and the majority of patients at adult cancer centers are elderly.

The paper concludes, “Cancer treatment for AYAs at both academic and community centers can be optimized by improving health care providers’ understanding of the key issues facing AYAs with cancer and by increasing AYA-specific institutional resources and support services.”

At the center of MultiCare’s research on this topic is a widely recognized expert on the world of adolescent and young adult (AYA) cancer, Rebecca “Becky” Johnson, MD, a pediatric and young adult oncologist at Mary Bridge Children’s.

Dr. Johnson is also an AYA cancer survivor — she was diagnosed with breast cancer when she was a 27-year-old medical resident.

“It was terrifying. I learned younger women with breast cancer do not do as well as older women,” Dr. Johnson remembered. “My doctors told me I had a 60 percent chance of living five years — but they also told me there was not a lot of data. I wondered, ‘why not?’”

A ‘black box’ of the unknown

Few of us can imagine what Dr. Johnson experienced as a 27-year-old confronting mortality at such an early age. But anyone can see the result: She has dedicated her career to finding answers for AYAs with cancer.

Dr. Johnson explains the challenge of studying AYAs in this way: “There’s been more study of cancer in pediatric and older adult populations — and less focus on AYAs as a group — because medicine traditionally divides patients into ’children‘ under about age 18, or ‘adults.’ I’m fascinated by AYA cancer because it spans those silos and less is known: in some ways it’s a black box. It’s rewarding to contribute to that body of knowledge.”

Jacobsen is also an AYA cancer survivor. She was diagnosed at age 17.  As a Puyallup high school senior, she was cast in Rogers High School’s production of “Beauty and the Beast.” Preparing for the show, she happily strapped a 6-foot pie server prop to her back for her musical dance number “Be Our Guest.” But she noticed she was more tired than usual after rehearsals.

The day after Christmas that year, she was diagnosed with Hodgkin’s Lymphoma. Jacobsen was handed a pamphlet entitled “Coping with Cancer” and discharged home. Between chemotherapy treatments she spent time by herself, contemplating this monumental change in her life.

“I never met another person my age”

There are  about 89,000 AYAs diagnosed with cancer every year in the United States, but those people are scattered around our country like pollen on a windy day. For example, during her treatment at a pediatric facility, the oldest patient that the teenage Jacobsen met was a 10 year-old.  During their cancer journey, AYAs may never have the chance to compare their stories and experiences with someone their own age.

“When I was sick, I never met anther young person my age with cancer. I felt so alone,” Jacobsen said. “There’s generally not enough of us in any one place to meet other AYAs with cancer or to create a large voice.”

From 2016 to 2018, Dr. Johnson was the principal investigator on a MultiCare project funded by the Patient Centered Outcomes Research Institute (PCORI).  This project gathered AYA stakeholders: survivors of AYA cancer, family members who have cared for an AYA with cancer, and MultiCare professionals who care for AYAs with cancer. Jacobsen volunteered to help Dr. Johnson recruit other AYA patients to the group.

“I don’t think anyone said ‘no’ when we approached them about joining the group. They could tell that I really cared about what they had to say, and I wanted them involved” Jacobsen said. “I knew that together we might make a real difference and the next person’s experience may be better because of us.”

The group  became the Tacoma AYA Oncology Council. Over the years, this group has informed several studies of the challenges facing AYAs, including the paper published this month. Among other things, the group created an award-winning short video, “Message from the Cancer Club,” sharing tips with health care professionals about how to give the best care to AYAs.

Though the initial PCORI-funded project has ended, the work, and Jacobsen and Dr. Johnson’s involvement in it, continues.

Jacobsen authored or co-authored the academic publications resulting from the original project, and she completed a patient-centered outcomes research (PCOR) scholars program in 2020. And Dr. Johnson is currently the principal investigator on AYA research project funded by a second PCORI grant.

For this second project, the MultiCare AYA team is sharing the knowledge they acquired during the first PCORI grant with cancer centers throughout the United States. In a series of video webinars in 2021, the MultiCare team is sharing its best practices for convening councils of AYA stakeholders. The goal of the project is to increase capacity for AYA-related patient centered outcomes research in the United States.

More information about AYAs and cancer are available from the National Cancer Institute and Teen Cancer America.