National Cancer Policy Forum/LIVESTRONG Workshop on Addressing the Needs of Adolescents and Young Adults with Cancer

When: July 15, 2013 - July 16, 2013 (8:00 AM Eastern)
Where: Keck Center (Room 100) • 500 Fifth St. NW, Washington, DC 20001

Topics Biomedical and Health Research, Diseases, Health Care Workforce, Health Services, Coverage, and Access, Quality and Patient Safety
Activity: National Cancer Policy Forum
Board: Board on Health Care Services

Workshop Background
Each year, nearly 70,000 adolescents and young adults (AYA) between the ages of 15 and 39 are diagnosed with cancer, approximately 8 times more than children under age 15. This population faces a variety of unique short and long-term health and psychosocial issues, such as reentry into school or the workforce, infertility as a result of treatment, neurocognitive effects, cardiac and pulmonary conditions, and secondary malignancies. Survivors of AYA cancers are also at increased risk for psychiatric conditions such as post-traumatic stress disorder, depression, and suicide.

In 2006, an NCI Progress Review Group produced a report outlining recommendations for improving the care and outcomes for adolescents and young adults with cancer, and in 2007, a plan outlining strategies for implementation of these recommendations was developed. Since that time, progress had been made in bringing attention to the AYA cancer burden. However, many challenges remain in providing optimal care and reducing the burden of cancer treatment to improve patient outcomes in this population.

Workshop Aims

This workshop aimed to identify gaps and challenges in caring for AYA patients with cancer, and discussed potential strategies and actions to guide stakeholders as they continue their work to improve the quality of care for this population. The workshop featured discussion panels and invited presentations from clinicians and other advocates working to improve the care and outcomes for the AYA population with cancer.

Participants were invited to discuss topics that included:

• challenges in developing the evidence base to guide the care of the AYA population,
• the unique psychosocial needs of the AYA population with cancer,
• behavioral health and lifestyle management for the AYA population, and
• long-term concerns for survivors of AYA cancers.

Planning Committee
Brenda Nevidjon (Co-chair), Duke University
Ruth Rechis (Co-chair), LIVESTRONG Foundation
Lynda Beaupin, Roswell Park Cancer Institute
Wendy Demark-Wahnefried, UAB Comprehensive Cancer Center
Karen Fasciano, Dana-Farber Cancer Institute 
Patricia A. Ganz, UCLA
Brandon Hayes-Lattin, OHSU Knight Cancer Institute
Melissa Hudson, St. Jude Children’s Research Hospital
Kevin C. Oeffinger, Memorial Sloan-Kettering Cancer Center
Lisa Richardson, CDC
Nita Seibel, NCI
Ashley Smith, NCI

Confirmed Speakers, Panelists, and Moderators
Heidi Adams, Critical Mass: The Young Adult Cancer Alliance
Justin Baker, St. Jude QOL and Palliative Care Service
Lynda Beaupin, Roswell Park Cancer Institute
Archie Bleyer, OHSU
Rebecca Block, OHSU
Jacqueline Casillas, UCLA Medical Center
Karen Emmons, Dana-Farber Cancer Institute
Hollie Farrish
Karen Fasciano, Dana-Farber Cancer Institute
David Freyer, Children's Hospital Los Angeles
Bernard Fuemmeler, Duke University School of Medicine
Patricia A. Ganz, UCLA
Lynne Harlan, NCI
Brandon Hayes-Lattin, OHSU Knight Cancer Institute
Melissa Hudson, St. Jude Children's Research Hospital
Tom Kean, C-Change
Jennifer Levine, Columbia University
Brenda Nevidjon, Duke University School of Nursing
Kevin Oeffinger, MSKCC
Elyse Park, Massachusetts General Hospital and Harvard Medical School
Helen Parsons, University of Texas Health Science Center at San Antonio
Kavita Patel, Brookings Institution
Chris Prestano
Ruth Rechis, LIVESTRONG Foundation
Lisa Richardson, CDC
Benjamin Rubenstein
Ashley Smith, NCI
Eric Tai, CDC
Robin Yabroff, NCI
Bradley J. Zebrack, University of Michigan School of Social Work

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