A new ASCO University^® program, Focus Under Forty, addresses the challenges of treating adolescent and young adult (AYA) patients with cancer. In contrast to the progress in cancer survival rates overall, the survival rates for patients aged 15 through 39 years who have cancer have not improved in more than 30 years.

Acute lymphoblastic leukemia (ALL) is a case in point. The survival rate of young adults is nearly half that of patients younger than 15. "Data from Europe and the United States show that the way pediatric oncologists treat ALL is different from the way adult oncologists do," explains ASCO member Brandon Hayes-Lattin, MD, an Associate Professor at Knight Cancer Institute of Oregon Health & Science University and a member of the task force that planned the Focus Under Forty curriculum. He adds, "Patients in the 'in-between' age group of 15 to 20 years could be treated for ALL in either the pediatric or adult world, but studies show that patients who received adult treatment fared much worse."

Focus Under Forty addresses such disparities, focusing on the specific challenges of diagnosing and treating AYA patients with cancer. ASCO and its philanthropic arm, the Conquer Cancer Foundation (formerly known as The ASCO Cancer Foundation), teamed with LIVESTRONG^® to develop the program.

Why Do Survival Rates for This Age Group Lag Behind?

A number of interrelated factors have contributed to the lack of progress in cancer care in AYAs-delayed diagnosis, limitations in access to care, widely varying referral patterns, and inconsistency in treatment and follow-up care. "These patients are getting lost," says Joyce Reineke, JD, a cancer and fertility advisor to LIVESTRONG who also serves on the joint Focus Under Forty planning task force.

Delayed diagnosis is common because AYAs typically see themselves as invulnerable, ignoring symptoms or delaying going to a doctor. In addition, providers often miss the cancer diagnosis initially because they do not suspect cancer in this population. To address delays in diagnosis, Focus Under Forty has educational content designed specifically by and for primary care providers.

Lack of research also contributes to the challenges in treating AYAs. An exceedingly low rate of participation in clinical trials and the high mobility of this population have hampered research. "The basic biology of cancers in this group differs from that in older patients, but we have a poor understanding of what distinguishes cancers in this population," Dr. Hayes-Lattin notes.

Fertility Preservation Is a Significant Issue

Ms. Reinecke was 29 years old when she was diagnosed with leiomyosarcoma. "I wasn't told right away, after my diagnosis, that my planned treatment could put me at risk for infertility. But when I met with several oncologists after surgery to talk about my future treatment, one of the oncology fellows brought this up." Ms. Reinecke and her husband then "scrambled to find an IVF facility" in order to create and then store embryos. They subsequently had twin daughters using a surrogate.

Ms. Reinecke says that breakdowns in communication about fertility preservation for women can often result in a loss of critical few weeks between diagnosis and implementation of chemotherapy or other treatments. "For example, the surgical oncologist might not include fertility preservation in patient discussions because it is not a direct risk of surgery," she points out. "However, by the time the patient gets to the medical oncologist, she probably won't have time to undertake something like egg banking before treatment."

Focus Under Forty includes two case-based modules that specifically address fertility preservation.

Psychosocial and Practical Concerns Different for this Group

Awareness of the significant psychosocial, financial, and practical concerns of this age group is also important. Both Ms. Reinecke and Dr. Hayes-Lattin, who had testicular cancer at age 28, point out that more oncologists need to understand the specific challenges faced by AYAs, whose concerns differ from those of either the child or the older adult with cancer. For example, after a cancer diagnosis, AYAs may be concerned about fertility preservation options. In addition, many of these patients have concerns about issues such as body image and relationships.

"You are there in the waiting room and everyone is a generation away from you," Ms. Reinecke comments. "It's very scary and isolating to be facing these issues-issues like mortality-and not to have peers there. You are out of sync with your own peers."

New Collaboration

This is the first time ASCO and LIVESTRONG have partnered on education. "It's exciting to see this collaboration address these critical issues and realize the impact this education can have on patients' lives," comments Dr. Hayes-Lattin, who is a senior medical advisor for LIVESTRONG. "The goal of Focus Under Forty is to have everyone who interacts with these patients understand what the differences are for this age group and know that the approach to care should be different."

To access Focus Under Forty, hosted on ASCO University, visit http://university.asco.org/focusunder40. ■

© 2011. American Society of Clinical Oncology. All rights reserved.