Adolescents, Young Adults and Cancer: What Are the Issues?

Adolescents, Young Adults and Cancer: What Are the Issues? 150 150 Abbie Roth

Adolescents and young adults with cancer have unique needs that may explain their plateau in survival rates, despite improved survival rates in other age groups.

At an age when achieving independence and experiencing life milestones are most important, adolescents and young adults facing a cancer diagnosis must meet unique challenges. These challenges may contribute to the plateau in survival rates for patients with malignancy in the 15- to 39-year-old age range.

review published in the Journal of Pediatric Hematology and Oncology looks at how changes in AYA oncology care are affecting these concerns and what changes are still needed.

Surviving AYA Cancers

“As a medical community, we realize that these patients do not fit neatly into the pediatric or adult world. They require a unique approach,” says Nicholas Yeager, MD, director of the Adolescent and Young Adult Program in the Section of Hematology, Oncology and Bone Marrow Transplant at Nationwide Children’s Hospital and author on the study.

The desire to be treated like an adult or, in the case of young adults, the idea that they are too old for a pediatric institution may influence where AYA patients seek care. Depending on the type of cancer, the choice between pediatric and adult institutions may influence survival rates, Dr. Yeager says.

Studies have shown that AYA patients treated on pediatric protocols for acute lymphoblastic leukemia (ALL) have higher survival rates. When analyzing the Surveillance, Epidemiology and End Results (SEER) registries’ data, the rapid decline in survival rate for ALL from 75 percent at age 16 to 48 percent at age 21 has been attributed to the transition of patients from primarily pediatric centers and protocols to primarily adult treatment centers and protocols.

One factor that may contribute to relatively tepid improvement in AYA survival is poor clinical trial participation in this age group. For all AYA cancers, clinical trial enrollment differs drastically between AYA patients at pediatric centers compared to adult facilities. Patients being treated in adult facilities are far less likely to be enrolled in a clinical trial than those being treated in pediatric facilities, according to the review article. There is some evidence of a correlation between clinical trial participation and improved cure rates. The expansion of clinical trials asking questions specifically about AYA cancer biology and treatment is critical to improving outcomes for these patients.

Being Young and Having Cancer

Because of the varied and complex nature of the psychosocial aspects of AYA oncology, a strong support system is crucial for the AYA patient. However, at a time when AYA patients need their friends and peers most, healthy young people may become stressed and anxious about a friend’s diagnosis of cancer and may respond by avoiding the patient. Isolation, lack of confidence and worry about when (or if) to disclose their cancer status are among social stressors for AYA patients and survivors, says Dr. Yeager.

Additionally, cancer for an adolescent or young adult often impacts important life milestones. Finishing school, career planning, forming intimate and committed relationships and starting a family all may be disrupted by a cancer diagnosis. Fertility preservation is an important concern for all cancer patients, but particularly those in the AYA group. Despite published recommendations from the American Society of Clinical Oncology, research shows persistent deficits in the discussion of fertility issues with patients and subsequent referrals to reproductive endocrinologists.

Changes in physical appearance including skin discoloration, surgical scars, weight changes and hair loss can have a negative impact on the patient’s body image and sexual identity, according to the article. These effects are not only felt during treatment but also experienced into survivorship. To date, AYA survivorship research has generally focused on individuals who age into the AYA age group after experiencing cancer in childhood or early adolescence. Individuals who experience the onset of cancer in the AYA age group are less studied.

“It is important to remember that although overall cure rates have plateaued for this age group, 70 percent of AYA patients are survivors,” Dr. Yeager says. “In addition to the important work being done on improving AYA patient outcomes, survivorship research specific to this group is also very important and has been sparse.”

“Future research in AYA survivorship should focus on late effects of cancer therapy, including fertility preservation and family building, cardiovascular health, and cognitive dysfunction as well as quality of life encompassing psychosocial needs, access to health care and health risk behaviors,” Dr. Yeager adds.

Reference:

  1. Shaw PH, Reed DR, Yeager N, Zebrack B, Castellino, SM, Bleyer A. Adolescent and Young Adult (AYA) oncology in the United States: A specialty in its late adolescenceJournal of Pediatric Hematology and Oncology. 2015 Mar 6. [Epub ahead of print].

About the author

Abbie Roth, MWC, is a passionate communicator of science. As the managing editor for science communication at Nationwide Children’s Hospital, she shares stories about innovative research and discovery with audiences ranging from parents to preeminent researchers and leaders. Before coming to Nationwide Children’s, Abbie used her communication skills to engage audiences with a wide variety of science topics. As a subject-matter expert, she developed content for science education materials for McGraw-Hill Education, bringing science concepts to life for middle and high school aged students. She also provided technical editing for manuscripts spanning the American Chemical Society journal portfolio, in addition to serving as production lead for ACS Synthetic Biology. Abbie earned her BS in Life Sciences at Otterbein University while working at the Tan & Cardinal newspaper and minoring in Public Relations. She is a Medical Writer Certified®, credentialed by the American Medical Writers Association.