New guidelines from the National Comprehensive Cancer Network recognize adolescent and young adult cancer patients as a distinct group with needs that are not being met by routine care for adults or for children.

The adolescent and young adult (AYA) oncology guidelines call for referral of these patients to cancer centers specializing in their age group as well as the individual’s specific type of cancer. The guidelines advocate a host of supportive services, including psychosocial assessment and fertility preservation counseling.

AYA patients are diagnosed with cancer when 15-39 years of age. They account for more than 70,000 new cancers every year, and their 5-year survival rate is lower than that of any other age group, according to Dr. Peter F. Coccia, chair of the National Comprehensive Cancer Network (NCCN) panel that made the recommendations.

Dr. Coccia, section chief, hematology/oncology at the University of Nebraska Medical Center in Omaha, presented the new guidelines along with Bradley J. Zebrack, Ph.D., of the University of Michigan Comprehensive Cancer Center in Ann Arbor, during the annual conference of the NCCN in Hollywood, Fla.

The frequency and distribution of cancer types that affect patients in this age demographic differ from the range in the pediatric and adult oncology populations, Dr. Coccia said in an interview. The best outcomes for adolescent and young adult patients are seen in patients with “pediatric-type” cancers, such as acute lymphoblastic leukemia and bone and soft-tissue sarcomas. Patients with adult-onset cancers, such as breast and colon cancer, have the worst outcomes.

He attributed the lack of survival gains to low enrollment in clinical trials (approximately 10% of 15- to 19-year-old patients and 1%-2% of 20- to 39-year-old patients), insufficient health insurance, inconsistent access to routine health care – and thus limited access to early diagnosis and aggressive early therapy – and reduced compliance with prescribed treatments.

Further distinguishing this patient group are the unique, age-related social and developmental considerations, according to Dr. Zebrack. This is the period when individuals establish their identity. “They are separating from their parents, becoming more involved with peers and dating, developing a sexual identity, and making decisions about the education, careers, and families,” he said.

With their cancer diagnosis, they are confronting mortality before they would otherwise have to and considering the possible loss of reproductive capacity, he elaborated. They are becoming more versus less dependent on their parents and their plans for the future are being disrupted.

All of these considerations warrant specialized oncology and support services that are designed to focus on the unique biological, clinical, psychosocial, and survivorship issues of the age group, according to the guidelines. “The distinct biology of disease as well as other age-related issues in the AYA population [fertility, long-term side effects, insurance/financial issues, transportation to clinic appointments, child care, psychosocial support, and adherence to therapy] should be considered in the treatment decision-making process,” the authors wrote.

In addition to advising that AYA cancer patients be referred to cancer centers “with expertise and experience in treating patients in this age group and the cancers that affect them,” the guidelines strongly encourage participation in clinical trials as a way to improve access to state-of-the art treatment and to provide critical insight into the optimal management for this group, according to Dr. Coccia.