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IOM Focuses on Gap in Care for Adolescents and Young Adults with Cancer

Eastman, Peggy

doi: 10.1097/01.COT.0000434070.08652.d3


WASHINGTON, DC—After decades of falling into a gap in oncology, adolescents and young adults (AYAs) who are being treated for cancer or are cancer survivors are receiving increased attention.

Speakers at a workshop here hosted by the National Cancer Policy Forum (NCPF) of the Institute of Medicine (IOM) along with the LIVESTRONG Foundation addressed the unique health and psychosocial challenges in caring for the 70,000 AYAs between the ages of 15 and 39 diagnosed each year with cancer, with the goal of developing evidence-based high-quality care for them.

Patients in this age group may have feelings of low self-esteem and vulnerability; face interruptions of school and work; lack health insurance; have “job lock” that keeps them in jobs they dislike due to insurance; face sexuality and fertility problems; endure financial hardships; and experience psychological distress relating to body image and peer relations, speakers said.

The workshop also focused on the unique needs of the estimated 500,000 AYA cancer survivors, who are at increased risk for late effects, chronic conditions such as cardiovascular disease and secondary cancers. Speakers discussed next steps in improving the quality of care for AYAs (see box). A summary report about the workshop should be ready in about five months, according to the IOM.

Brandon Hayes-Lattin, MD, Medical Director of the Adolescent and Young Adult Oncology Program at Oregon Health and Science University's Knight Cancer Institute, noted that in the time since the National Cancer Institute conducted a review of AYAs in 2006, progress has been made in increasing awareness of the special needs of this population, Now, said Hayes-Lattin, a member of the NCPF's AYA workshop planning group, “we need to evolve from ‘raise awareness’ to developing requirements for education and training in care of AYAs.”

A survivor of a young adult cancer himself, he is also board chair of Critical Mass: The Young Adult Cancer Alliance, and was lead author on a 2010 article, “Adolescent and Young Adult Oncology Training for Health Professionals: A Position Statement (JCO 2010;28:4858-4861). Asked for this article if that position statement is still timely, he said it is.

In addition to the IOM and ASCO, the National Comprehensive Cancer Network (NCCN) has also focused on AYAs in recent years. In March 2012, the NCCN issued clinical practice guidelines for care of AYAs, stating that “there has been minimal improvement in the survival rate in the 70,000 new AYA patients with invasive cancer diagnosed yearly.” The panel that wrote the guidelines strongly recommended that AYAs be referred to centers with experts on this age group and the cancers that affect them.

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Addressing and Supporting the Science of Cancer in AYAs

Asked by OT what he would like to see come out of the meeting, NCPF member Otis W. Brawley, MD, Chief Medical Officer of the American Cancer Society, said, “I'd like to see the scientific community address the science of cancer in AYAs. And I'd like to see the AYA community support that science. In oncology, the medical community has very much addressed people over the age of 60 and over the age of 50, and children. There is a huge gap for AYAs.”

Brawley noted that survivorship issues are especially critical for AYAs, since many of them have three to five co-morbid conditions because of their treatment: “We've spent so much time addressing the cancer that we haven't addressed the patient with the cancer.”

Data from studies presented at the meeting highlighted the challenges facing adolescents and young adults with cancer. In findings from a survey of 1,338 patients age 15 to 39 conducted between 2002 and 2012 by LIVESTRONG, 84 percent of respondents said their cancer adversely affected their work, and 32 percent said their cancer had caused them to miss a large amount of school.

About 22 percent had an insurance company refuse to cover a visit to a physician or treatment facility of their choice, and 12 percent were denied insurance because of their cancer. Among AYAs with an employed caregiver, such as a parent or spouse, 54 percent reported that their caregiver had to make work changes because of the AYA's cancer.

“The findings indicate that AYA survivors are experiencing a significant burden of practical concerns after a diagnosis,” said the Co-Chair of the workshop's planning committee, Ruth Rechis, PhD, MS, the LIVESTRONG Foundation's Director of Evaluation and Research and principal investigator on the survey. The other Co-Chair was Brenda M. Nevidjon, MSN, RN, FAAN, of Duke University.

In a survey sample of 524 AYAs from the AYA HOPE (Health Outcomes and Patient Experience) study, 35 percent of respondents reported an unmet need for a service, and more than 50 percent reported an unmet need for information they felt could help them, said Lynne C. Harlan, PhD, MPH, an epidemiologist in the Applied Research Program of NCI's Division of Cancer Control and Population Sciences.

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Returning to Work or School

Data from that study also show that uninsured AYAs were significantly less likely to return to work or school following diagnosis and that although most AYAs do return to work or school, there is “a strong belief that cancer has a negative impact on work and education,” said another speaker, Helen M. Parsons, PhD, MPH, Assistant Professor in the Department of Epidemiology and Biostatistics of the University of Texas Health Science Center at San Antonio.

Because of the unique challenges related to their youth, AYAs with cancer need special help coping with their psychological and social needs, said another member of the workshop planning group, Karen M. Fasciano, PsyD, a psychologist at Dana-Farber Cancer Institute and Brigham and Women's Hospital.

“We need to integrate a developmental understanding of AYAs into oncology care,” she said, noting that there is a progression of development from ages 15 to 39. Teenagers, for example, are often sensation seekers who take risks; couch their moral reasoning in black and white; jump to conclusions; disagree for the sake of disagreeing; and seek peer role models.

Bradley Zebrack, PhD, MSW, MPH, who served on the NCCN's AYA guideline panel, Associate Professor at the University of Michigan School of Social Work and a member of the Comprehensive Cancer Center's Division of Cancer Prevention and Control and survivor of a young adult cancer himself, noted at the meeting that although some adolescents and young adults with cancer do show adaptive resilience in the face of their diagnosis, in one survey sample 28 percent indicated distress at the time of a cancer diagnosis and 12 percent maintained a chronic level of distress over one year—complicated by their being at risk in general for social isolation and concerns about dating and full disclosure, sexuality, intimacy, and rejection.

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Next Steps

Workshop presenters and attendees pointed to the following as key areas for action:

1. Defining the best setting for cancer care of AYAs along the age spectrum and the best professionals to provide it, who should give each AYA patient a detailed care plan—For example, should adolescents be treated in a pediatric or adult setting or a hybrid of both?

2. Fostering strategies and technologies to help AYAs preserve their fertility, which the NCCN, ASCO, and the American Society of Reproductive Medicine all say must be addressed in cancer care for this population.

3. Amending age requirements in clinical trials so AYAs may participate, thus enriching the knowledge base for this population group.

4. Developing evidence-based psychosocial interventions to help AYAs cope with the unique challenges they face following a cancer diagnosis.

5. Supporting efforts to improve health insurance coverage for AYAs. While the Affordable Care Act has been a great help in expanding coverage for AYAs, this act is under a huge attack which could weaken it, noted a long-time leader in AYA cancer research and care, Archie Bleyer, MD, Clinical Research Professor at the Knight Cancer Institute of Oregon Health and Science University. “We've got a huge marketing campaign to do to preserve the act's protections,” he warned.

6. Supporting efforts to make insurance more flexible and portable so AYAs don't get stuck in a “job lock” situation, staying in a job they hate just because they need the insurance the job provides. Job lock can stunt careers, said Patricia A. Ganz, MD, Vice Chair of the NCPF and a member of the workshop's planning committee, Distinguished University Professor at the UCLA Fielding School of Public Health, and Director of Cancer Prevention & Control Research at UCLA's Jonsson Comprehensive Cancer Center.

7. Setting forth principles and best practices for helping AYAs make the transition from cancer care back into school or work.

8. Developing best practices for dealing with the late effects, co-morbid conditions, and secondary cancers that affect many AYAs with the disease. Another member of the planning committee, Kevin C. Oeffinger, MD, Director of the Adult Long-Term Follow-Up Program at Memorial Sloan-Kettering Cancer Center, cited one sample of childhood cancer survivors that showed that 95.5 percent had at least one chronic health condition by age 45. He noted that 16 percent of all incident cancers are second primary neoplasms and that AYA cancer survivors are at high risk of secondary cancers.

9. Motivating and helping AYA cancer survivors to follow evidence-based healthy lifestyles that decrease their risk of recurrence and late effects. For example, a data sample of about 4,000 AYA cancer survivors (median age of 40.2) showed that 25 percent smoked and 31 percent were obese, said Eric W. Tai, MD, MS, Medical Officer with the Centers for Disease Control and Prevention's Comprehensive Cancer Control Branch.

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More on Survivorship Challenges in AYAs

Watch for the next article in 's Survivorship series, covering the gaps in care of childhood and AYA survivors-and how they differ. And in the meantime, catch up on the rest of the series covering survivorship care plans, survivors' unmet psychosocial needs, and unaddressed late effects of breast cancer:

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Challenges Since 2006 Report

The background for the workshop noted that in 2006, an NCI Progress Review Group produced a report outlining recommendations for improving the care and outcomes for AYAs with cancer, and in 2007, a plan outlining strategies for implementation of these recommendations was developed. Since then, although much progress has been made in bringing attention to the issue, challenges remain in providing optimal care and reducing the burden of cancer treatment to improve patient outcomes in this population.

© 2013 by Lippincott Williams & Wilkins, Inc.
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