We were looking for a way to give these patients the right resources.… I have heard AYA patients say, ‘I wish the guidelines were available when I was first diagnosed.
—Peter F. Coccia, MD
The National Comprehensive Cancer Network (NCCN) has issued new NCCN Guidelines for Patients, titled “Caring for Adolescents and Young Adults [AYA].” These guidelines fill an unmet need in oncology, as Peter F. Coccia, MD, Chair of the NCCN Guidelines Panel for Young Adult Oncology and a member of the NCCN Board of Directors, explained to The ASCO Post.
“I am very excited about this publication,” said Dr. Coccia, the Ittner Professor and Vice-Chairman of the Department of Pediatrics at the University of Nebraska Medical Center in Omaha. “I have been recommending for several years that NCCN develop guidelines for the AYA age group as they previously did for ‘Senior Adult Oncology.’ This age group has traditionally not participated in clinical trials, and their outcomes have not changed much.”
NCCN’s professional practice guidelines for adolescents and young adults were issued in 2012. These are now joined by the patient guidelines, which are available on the Web (www.nccn.com) and as hard copies. This was made possible through support from the NCCN Foundation and the LIVESTRONGFoundation as well as through collaboration with Critical Mass: The Young Adult Cancer Alliance.
Recounting the history of the patient guidelines, Dr. Coccia recalled how the American Cancer Society once produced patient education booklets for common cancers. “The problem was that the NCCN would update its guidelines at least every year, but the American Cancer Society couldn’t keep pace. About 5 years ago these little booklets were getting very out of date, so the NCCN decided to initiate the Guidelines for Patients series, which became possible through the NCCN Foundation,” he said.
The AYA Guidelines for Patients join a list of 11 others, including breast, colon, non–small cell lung, ovarian, pancreatic, and prostate cancers, chronic myelogenous leukemia, malignant pleural mesothelioma, melanoma, multiple myeloma, and lung cancer screening.
“Ours is the most recent, and it is the first that is not tumor-specific. It’s mainly about supportive care,” he noted.
Experts in adolescent and young adult oncology from all 21 NCCN member institutions developed both the NCCN Guidelines for AYA Oncology for medical professionals and had input into the AYA Guidelines for Patients. The Panel is a multidisciplinary group of oncologists specializing in malignancies common to adolescents and young adults, as well as psychologists, social workers, and experts in survivorship.
“It is their hope and expectation that both sets of guidelines will contribute to optimizing care and improving outcomes in AYA patients with cancer,” Dr. Coccia said.
Importance of Patient Guidelines for This Group
Multiple host factors influence disease management and prognosis in adolescent and young adult patients, such as disease biology distinctions, genetic variants, developmental stage, pharmacologic considerations, and coexisting morbidities. “But the AYA population also has unique social, psychological, and economic issues that have major influences on morbidity and mortality,” Dr. Coccia emphasized. These include such factors as the transition from family to independent living, the generally poorer adherence to medications, fertility concerns, sexual issues, and others.
These issues are discussed in detail in the NCCN’s Clinical Practice Guidelines for AYA oncology, and they are presented in a lay format in the lavishly illustrated 118-page patient booklet.
Dr. Coccia said he views the transition from family-focused to patient-focused care as a key element of adolescent and young adult cancer care, and this is reflected in the publication. “In my experience, this is one of the major issues leading to decreased compliance with treatment in this age group,” he said. “The absence of care partners argues strongly for the importance of multidisciplinary teams to assist in the management of AYA patients with cancer.”
What Are We Telling Younger Patients?
The Patient Guidelines state the purpose this way:
Learning that you have cancer is a shock. Learning that you have cancer when you’re still in school, or just getting started in your career, or just starting a family makes the shock even greater. This booklet is designed to help you understand what’s happening and to get the support you need, including the best possible cancer treatment. It includes some basic information on the cancer tests and treatments you may go through, tips for coping with the physical, social, and emotional challenges of cancer treatment, and information on resources that can help make the process easier.
There are 11 chapters in all, including Dealing with the diagnosis, Navigating the treatment process, and Thinking about the unthinkable, as well as more than 100 resources and a cancer dictionary.
Elaborating on a critical issue in this young age group, Dr. Coccia noted that up to 70% of young adult cancer patients who could benefit from fertility preservation never take advantage of such procedures. “We put fertility preservation right upfront,” he said. “Before you discuss treatment, if you have the time to delay it, fertility issues should be considered.”
How the Booklet Will Be Used
Dr. Coccia said the booklets will be distributed to the 21 member institutions of the NCCN, the institutional members of the Children’s Oncology Group, and the two dozen or so other AYA programs across the country.
He hopes the booklets will also find their way into community cancer centers and private physician’s offices. While the hard copies are striking, the online version can be updated as needed and provide “live” links to more than 70 resources listed in the book (another two dozen or so are print resources). The resources, which constitute one of the most important components of the booklet, direct the reader to general information on cancer in adolescents and young adults, cancer diagnosis and treatment, fertility issues, managing side effects, dealing with life during and after treatment, and end-of-life issues.
Dr. Coccia said that oncologists and their support staff should let patients know these guidelines are available, and how to access them. An educated patient is a benefit not only to himself or herself, but to the busy oncologist as well, he added.
“When patients are diagnosed, they Google their disease and end up with a pile of material, much of which is not relevant to their disease, or out of date, and scary. There is no way to discriminate on the Web, and they come in totally confused,” he said. “We were looking for a way to give these patients the right resources. It is also relationship-building. Within this book, there are patient stories. I have heard AYA patients say, ‘I wish the guidelines were available when I was first diagnosed.’” ■
Disclosure: Dr. Coccia reported no potential conflicts of interest.
NCCN Patient Guidelines for Adolescents and Young Adults with Cancer are now available. Visit www.nccn.com to view these and other NCCN guidelines for patients.
Patient versions of the NCCN Guidelines are available in the following categories: