Appendix

Workshop Statement of Task and Agenda

Addressing the Needs of Adolescents and Young Adults with Cancer

A Workshop hosted by the Institute of Medicine’s
National Cancer Policy Forum and the LIVESTRONG Foundation,
with support from Critical Mass: The Young Adult Cancer Alliance

Statement of Task

An ad hoc committee will plan and host a 1.5-day public workshop to examine the unmet needs of adolescents and young adults (AYAs) with cancer. The workshop will feature invited presentations from clinicians and other advocates working to improve the care and outcomes for the AYA population with cancer. A major goal of the workshop will be to identify gaps and challenges in providing optimal care to AYA patients with cancer and to discuss potential strategies and actions to address them.

Participants will be invited to discuss topics that may include

•   best practices for diagnosing and caring for AYA patients with cancer;

•   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;

•   long-term concerns for survivors of AYA cancers; and

•   end-of-life care and planning in the AYA population.

An individually authored workshop summary will be prepared by a designated rapporteur based on the information gathered and the discussions held during the workshop in accordance with institutional policy and



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Appendix Workshop Statement of Task and Agenda Addressing the Needs of Adolescents and Young Adults with Cancer A Workshop hosted by the Institute of Medicine’s National Cancer Policy Forum and the LIVESTRONG Foundation, with support from Critical Mass: The Young Adult Cancer Alliance Statement of Task An ad hoc committee will plan and host a 1.5-day public workshop to examine the unmet needs of adolescents and young adults (AYAs) with cancer. The workshop will feature invited presentations from clinicians and other advocates working to improve the care and outcomes for the AYA population with cancer. A major goal of the workshop will be to identify gaps and challenges in providing optimal care to AYA patients with cancer and to discuss potential strategies and actions to address them. Participants will be invited to discuss topics that may include • best practices for diagnosing and caring for AYA patients with cancer; • 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; • long-term concerns for survivors of AYA cancers; and • end-of-life care and planning in the AYA population. An individually authored workshop summary will be prepared by a designated rapporteur based on the information gathered and the discus- sions held during the workshop in accordance with institutional policy and 73

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74 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER procedures. No committee will be used in the development of the workshop summary. July 15, 2013 7:45 am Registration 8:15 am Welcome from the Institute of Medicine’s National Cancer Policy Forum •  atricia Ganz, University of California, Los Angeles P (UCLA), Vice Chair, National Cancer Policy Forum Overview of the Workshop •  renda Nevidjon, Duke School of Nursing B Workshop Planning Committee Co-Chair •  uth Rechis, LIVESTRONG Foundation R Workshop Planning Committee Co-Chair 8:30 am Session 1: Overview Moderator: Ruth Rechis, LIVESTRONG Foundation Epidemiology and Biology of Cancer in the AYA Population •  rchie Bleyer, Oregon Health & Science University A (OHSU) and St. Charles Health System Developmental and Psychological Stages and Disruptions, Ownership of One’s Health, and the Role of the Family • Karen Fasciano, Dana-Farber Cancer Institute Overview of Progress Since the 2006 NCI Progress Review Group Report • Brandon Hayes-Lattin, OHSU Group Discussion 10:00 am Break

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Appendix 75 10:15 am Session 2: Unique Risks and Vulnerabilities of AYA Patients Across the Lifespan Moderator: Ashley Smith, National Cancer Institute (NCI) AYA Survey Results • Ruth Rechis, LIVESTRONG Foundation • Eric Tai, Centers for Disease Control and Prevention • Lynne Harlan, NCI Socioeconomic Challenges •  elen Parsons, University of Texas Health Science H Center at San Antonio • Robin Yabroff, NCI Psychological and Relationship Challenges and Management •  radley J. Zebrack, University of Michigan School of B Social Work Group Discussion 12:45 pm Lunch Break 1:45 pm Session 3: Treatment and Survivorship Care Planning for AYA patients Moderator: Lynda Beaupin, Roswell Park Cancer Institute Long-Term and Late Effects Following AYA Cancer •  evin Oeffinger, Memorial Sloan-Kettering Cancer K Center Selecting Treatment Protocols to Optimize Patient Outcomes and Survival • Brandon Hayes-Lattin, OHSU Preserving Fertility • Jennifer Levine, Columbia University

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76 NEEDS OF ADOLESCENTS AND YOUNG ADULTS WITH CANCER Surveillance for Recurrence and Secondary Cancers • Patricia Ganz, UCLA Group Discussion 4:00 pm Break 4:15 pm AYA Survivor Panel Discussion  Moderator: Heidi Adams, Critical Mass: The Young Adult Cancer Alliance • Hollie Farrish • Chris Prestano • Benjamin Rubenstein 5:30 pm Wrap-Up Day 1 and Adjourn July 16, 2013 7:30 am Registration 8:00 am Session 4: Lifestyle Management and Behavioral Health Across the Care Continuum Moderator: Karen Fasciano, Dana-Farber Cancer Institute Diet, Physical Activity, and Weight •  ernard Fuemmeler, Duke University School of B Medicine Smoking, Alcohol, and Other Risk-Taking Behaviors • Karen Emmons, Dana-Farber Cancer Institute Communication with AYA Patients • Jacqueline Casillas, UCLA Medical Center AYA Specific Programs • Rebecca Block, OHSU Group Discussion

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Appendix 77 9:45 am Break 10:00 am Session 5: Models of Care and Gaps in the Quality of Care  Moderator: Brenda Nevidjon, Duke University School of Nursing Transition and Gaps in AYA Survivorship Care • David Freyer, Children’s Hospital Los Angeles Palliative and End-of-Life Care for AYA Patients •  ustin Baker, St. Jude Quality of Life and Palliative Care J Service Gaps in the Evidence Base and Research Priorities for AYA Survivorship Care • Melissa Hudson, St. Jude Children’s Research Hospital Health Insurance Challenges Faced by AYA •  lyse Park, Massachusetts General Hospital and E Harvard Medical School Group Discussion 12:15 pm Workshop Wrap-Up • Tom Kean, C-Change 12:30 pm Adjourn

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