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Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary (2013)

Chapter: Appendix: Workshop Statement of Task and Agenda

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Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
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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 discussions held during the workshop in accordance with institutional policy and

Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×

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
 

•   Patricia Ganz, University of California, Los Angeles (UCLA), Vice Chair, National Cancer Policy Forum

 
  Overview of the Workshop
 

•   Brenda Nevidjon, Duke School of Nursing Workshop Planning Committee Co-Chair

 

•   Ruth Rechis, LIVESTRONG Foundation 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
 

•   Archie Bleyer, Oregon Health & Science University (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
Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×
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

•   Helen Parsons, University of Texas Health Science Center at San Antonio


•   Robin Yabroff, NCI

 
  Psychological and Relationship Challenges and Management

•   Bradley J. Zebrack, University of Michigan School of 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

•   Kevin Oeffinger, Memorial Sloan-Kettering Cancer Center

 
  Selecting Treatment Protocols to Optimize Patient Outcomes and Survival

•   Brandon Hayes-Lattin, OHSU

 
  Preserving Fertility

•   Jennifer Levine, Columbia University

Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×
  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

•   Bernard Fuemmeler, Duke University School of 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
Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×
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

•   Justin Baker, St. Jude Quality of Life and Palliative Care 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

•   Elyse Park, Massachusetts General Hospital and Harvard Medical School

Group Discussion  
 
12:15 pm Workshop Wrap-Up

•   Tom Kean, C-Change

 
12:30 pm Adjourn
Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×

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Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×
Page 73
Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×
Page 74
Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×
Page 75
Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×
Page 76
Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×
Page 77
Suggested Citation:"Appendix: Workshop Statement of Task and Agenda." Institute of Medicine. 2013. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18547.
×
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Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer is the summary of a workshop convened by the Institute of Medicine's National Cancer Policy Forum in July 2013 to facilitate discussion about gaps and challenges in caring for adolescent and young adult cancer patients and potential strategies and actions to improve the quality of their care. The workshop featured invited presentations from clinicians and other advocates working to improve the care and outcomes for the adolescent and young adult population with cancer.

Cancer is the leading disease-related cause of death in adolescents and young adults. Each year nearly 70,000 people 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 difficulty reentering school, the workforce, or the dating scene; problems with infertility; cardiac, pulmonary, or other treatment repercussions; and secondary malignancies. Survivors are also at increased risk for psychiatric conditions such as anxiety, depression, substance abuse, and suicide and may have difficulty acquiring health insurance and paying for needed care. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer discusses a variety of topics important to adolescent and young adult patients with cancer, including the ways in which cancers affecting this group differ from cancers in other age groups and what that implies about the best treatments for these cancer patients. This report identifies gaps and challenges in providing optimal care to adolescent and young adult patients with cancer and to discuss potential strategies and actions to address them.

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