New cancer guidelines developed for adolescent and young adult (AYA) age group

UNMC oncologist heads panel trying to improve outcomes in difficult-to-treat group

A University of Nebraska Medical Center pediatric oncologist, Peter F. Coccia, M.D., served as chairman of a national panel that developed new guidelines for the diagnosis, treatment, and after therapy for adolescents and young adults with cancer.

The adolescent and young adult (AYA) group includes individuals between the ages of 15 to 39 years and represents a challenging age group for onocologists to treat successfully.

The American Cancer Society’s Cancer Journal for Clinicians notes that remarkable progress has been made in the treatment of children under the age of 15 and in adults over 40 years of age in the last 35 years, but there has been minimal improvement in the survival rate in the 70,000 new AYA patients with invasive cancer diagnosed yearly.

The guidelines were developed through the National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 21 of the world’s leading cancer centers dedicated to improving the quality and effectiveness of care provided to patients with cancer. The UNMC Eppley Cancer Center at The Nebraska Medical Center is a charter member of the NCCN.

“There is an urgent need for increased awareness of the many unique issues responsible for these poor outcomes in AYA oncology patients,” said Dr. Coccia, who is Ittner professor and vice chairman of pediatrics at UNMC.

“Patients in this age group with pediatric types of cancers such as acute lymphoblastic leukemia and bone and soft tissue sarcomas have better outcomes when treated with aggressive therapies utilized by pediatric oncologists,” said Dr. Coccia, who is chairman of the NCCN AYA Oncology Panel and a member of the NCCN board of directors. “We also see worse outcomes for AYA patients diagnosed with adult onset cancers such as breast and colon cancer. We hope and believe these new guidelines will make a difference in how these patients are managed throughout the course of their disease.”

The NCCN Guidelines address many of the factors responsible for the disappointing results in AYA patients:

  • In the United States, only about 10 percent of 15 – 19 year old patients and 1 - 2 percent of 20 – 39 year old patients enroll in clinical trials. Conversely, more than 90 percent of children under 15 years of age are managed in centers that participate in the Children's Oncology Group (COG) protocols or clinical trials.
  • In addition, AYA patients more often lack adequate health insurance and may not have access to either routine health care, which leads to earlier diagnosis, or to state-of-the-art care once diagnosed.
  • Moreover, AYA patients tend to be less compliant with their prescribed treatments.

The NCCN Guidelines Panel, made up of experts in AYA oncology from the 21 NCCN member institutions, strongly advised that AYA patients be referred to cancer centers with expertise and experience in treating patients in this age group and the cancers that affect them.

The panel also cited the need for improved enrollment in clinical trials, the need for a multidisciplinary approach to treatment, and specific attention to the special physical and psychosocial issues that AYA patients face as critical components in delivering state-of-the-art care.

The NCCN Guidelines include recommendations for fertility preservation, screening recommendations for late effects after successful completion of therapy, palliative care and end-of- life considerations for patients who fail curative therapy; and detail the available online resources for AYA patients and cancer survivors.

“Psychological distress is significantly greater among AYA patients as compared to younger children or older patients with cancer,” said Bradley Zebrack, Ph.D., of the University of Michigan Comprehensive Cancer Center and a member of the NCCN AYA Oncology Panel. “These patients face serious problems related to loss of fertility, disruptions in their education or their careers, and their social interactions, in addition to the threat to their mortality.

“These issues, and the isolation that accompanies them, can affect their lives for many years. Managing these patients medically and communicating effectively with them can be challenging and requires that the full team of health care providers be knowledgeable about adolescent behavior.”

The NCCN Guidelines for AYA Oncology were presented last week at the NCCN 17th Annual Conference: Clinical Practice Guidelines & Quality Cancer Care™.

The NCCN Guidelines are developed and updated through an evidence-based process in which the expert panel integrates comprehensive clinical and scientific data with the judgment of the multidisciplinary panel members and other experts drawn from NCCN Member Institutions. Access to the NCCN Guidelines for AYA Oncology or any of the NCCN Guidelines is available free of charge at NCCN.org

About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 21 of the world’s leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives.

The NCCN member institutions are: City of Hope Comprehensive Cancer Center, Los Angeles, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Memorial Sloan-Kettering Cancer Center, New York, NY; H. Lee Moffitt Cancer Center & Research Institute, Tampa, FL; The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Cancer Institute, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/University of Tennessee Cancer Institute, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Michigan Comprehensive Cancer Center, Ann Arbor, MI; UNMC Eppley Cancer Center at The Nebraska Medical Center, Omaha, NE; The University of Texas MD Anderson Cancer Center, Houston, TX; and Vanderbilt-Ingram Cancer Center, Nashville, TN.

About the University of Nebraska Medical Center

Through world-class research and patient care, UNMC generates breakthroughs that make life better for people throughout Nebraska and beyond. Learn more at www.unmc.edu.



C. Lyn Fitzgerald
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