NCCN Announces New Guidelines for Adolescent and Young Adult Oncology

NCCN has issued new NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Adolescent and Young Adult (AYA) Oncology. AYA patients are defined in the guidelines as individuals 15 to 39 years of age at initial cancer diagnosis. The guidelines address the critical issues that AYA patients with cancer and their caregivers encounter at diagnosis, during treatment, and after therapy.

According to the American Cancer Society’s Cancer Journal for Clinicians, remarkable progress has been made in the treatment of children younger than 15 years and in adults older than 40 years 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.

“There is an urgent need for increased awareness of the many unique issues responsible for these poor outcomes in the AYA oncology patients,” noted Peter F. Coccia, MD, of the UNMC Eppley Cancer Center at The Nebraska Medical Center, chair of the NCCN AYA Oncology Panel, and a member of the NCCN Board of Directors. “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. We also see worse outcomes for AYA patients diagnosed with adult-onset cancers, such as breast and colon cancers. We hope and believe that the new NCCN Guidelines for AYA Oncology will make a difference in how these patients are managed throughout the course of their disease.”

The NCCN Guidelines address the many factors responsible for the disappointing results in AYA patients. In the United States, only about 10% of patients aged 15 to 19 years and 1% to 2% of those aged 20 to 39 years enroll in clinical trials. Conversely, more than 90% of children younger than 15 years are managed in centers that participate in the Children’s Oncology Group 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 state-of-the-art care once diagnosed. Moreover, AYA patients tend to be less compliant with their prescribed treatments.

The NCCN Guidelines Panel, composed of experts in AYA oncology from the 21 NCCN Member Institutions, strongly advises 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. They cite 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; and palliative care and end-of-life considerations for patients for whom curative therapy fails, and detail the available online resources for AYA patients and cancer survivors.

Bradley J. Zebrack, PhD, MSW, MPH, of the University of Michigan Comprehensive Cancer Center, a member of the NCCN AYA Oncology Panel, stresses the importance of understanding and managing psychosocial issues for these patients.

“Psychological distress is significantly greater among AYA patients as compared to younger children or older patients with cancer. 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 team must also be well trained in how to communicate with teens and young adults, as well as their families and peers. The new NCCN Guidelines include a comprehensive psychosocial assessment to assure that these issues are fully addressed.”

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.

NCCN Opens 17th Annual Conference With Roundtable Discussion on Cancer Care and Corporate America

NCCN opened its 17th Annual Conference with a roundtable discussion entitled “Cancer and Corporate America: Business as Usual?” ABC News veteran and anchor, Sam Donaldson, moderated the opening session, as he has for the past 6 years, telling the hundreds of conference attendees that 58% of nonelderly Americans rely on their employers for their health insurance. He asked, “What is business as usual when it comes to delivering cancer care?”

The panel, some of whom are cancer survivors, included experts from business, industry, medicine, and public policy, and addressed a range of issues that businesses face today in defining quality cancer care and developing the necessary methods to assure that their employee populations have access to that care. They also discussed both opportunities and barriers to delivering excellent cancer care from a variety of perspectives, and took on the difficult issues related to health care reform. This year’s topic grew out of the ongoing collaboration between the National Business Group on Health and NCCN, which is working to develop standards and tools to assist corporations in this increasingly complex area.

The panel included Robert W. Carlson, MD, an oncologist from Stanford Cancer Institute; Helen Darling, President & Chief Executive Officer of the National Business Group on Health; John S. Greene, Director of Engineering from Salesforce.com, a survivor of acute myeloid leukemia; Carole Klase, PhD, who survived Merkel cell carcinoma; J. Randall MacDonald, Senior Vice President of Human Resources for IBM; Sheri S. McCoy, MSc, MBA, Vice Chairman of the Executive Committee of Johnson & Johnson; Kavita Patel, MD, MSHS, of the Brookings Institution’s Engelberg Center for Health Care Reform; and J. Brent Pawlecki, MD, MMM, Chief Health Officer of The Goodyear Tire & Rubber Company.

Sam Donaldson opened the discussion by asking the panel, “What do companies owe their employees in terms of delivering high-quality cancer care?”

Helen Darling addressed that question saying “Great companies believe in investing in their employees, and providing excellent health care is central to that belief.” She noted that companies who participate in the National Business Group on Health are committed to assuring that their employees have the tools and resources they need when they are diagnosed with cancer. She emphasized that providing health navigators to support patients as they navigate the complex pathways of the system is one example of this commitment.

J. Randall MacDonald, who oversees medical benefits for IBM, agreed but noted, “The reality is that this is a business proposition. A healthy employee is a productive employee.” He stressed, however, the need for evidence-based means of deciding what is effective and not effective in delivering care.

J. Brent Pawlecki, MD, MMM, pointed to 3 factors that help employers assure that their employees are “healthy, engaged, and productive.” These include an emphasis on preventive medicine, obtaining the “right care at the right place at the right time,” and focusing more on end-of-life care.

“How will cancer change my life?” That’s the question that every patient asks, according to Robert W. Carlson, MD, and one area of major concern is their ability to work. Patients worry about job security, adequate health insurance, and the response that their diagnosis will evoke from employers and coworkers.

John S. Greene pointed to the support he received from his entire company following his diagnosis in November 2010, and noted that Salesforce.com CEO Marc Benioff made it clear that “the company is here for you; I am here for you.”

Sam Donaldson then pressed the panel to address the issue of cost in providing excellent cancer care.

J. Randall MacDonald, whose company employs over 500,000 people and spends $1.2 billion a year on health care for its employees, stated, “Cost is an issue,” and noted that he constantly has to balance individuals’ needs and requests with the larger issues of running the business.

Helen Darling pointed to identifying and reducing waste within the system as a key to controlling costs. “It’s what you pay for, not what you pay,” she said, and that “by shifting wasted dollars to more effective, evidence-based medicine, you create budget room to pay for what works.”

“We need to take a step back,” agreed Sheri S. McCoy, MSc, MBA, “and make sure that we invest in research and development. We need to know who benefits from a treatment and who doesn’t.”

Carole Klase, PhD, a mental health professional, stressed the need to include mental health in benefits, reminding the panel that “the psychological problems can be as big as the cancer itself.”

Sam Donaldson’s final question focused on new health care legislation, the Patient Protection and Affordable Care Act (PPACA), which would guarantee access to health insurance for all Americans. He noted that 60 million Americans currently do not have health insurance and asked the group if the law helps patients with cancer.

Kavita Patel, MD, MSHS, who was instrumental in developing the legislation, answered in the affirmative, saying that the new law “evens the playing field for cancer patients,” and pointed to provisions that would make it impossible to exclude people with preexisting conditions from insurance plans as one improvement.

Helen Darling noted the expanded coverage will make it even more important to assure that medicine is evidence-based. She described the work that her organization is doing with NCCN as a model for solving problems. “If we have appropriate guidelines and we make sure every patient gets an appropriate assessment, then the benefits will be covered and the decisions will be driven by evidence and research.”

Robert W. Carlson, MD, concluded the discussion with a strong statement that summarized the complex issues that the panel addressed during the session. “We need to make sure the system is configured so that employees fight their cancers, so they don’t waste time fighting their insurance companies or being concerned about their employment.”

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