IDENTIFYING AND ADDRESSING
THE
NEEDS OF ADOLESCENTS AND
YOUNG ADULTS WITH CANCER

WORKSHOP SUMMARY

A LIVESTRONG and Institute of Medicine Workshop

Sharyl J. Nass and Margie Patlak, Rapporteurs

National Cancer Policy Forum

Board on Health Care Services

INSTITUTE OF MEDICINE
              OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

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Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer WOR KSHOP SUM MA RY A LIVESTRONG and Institute of Medicine Workshop Sharyl J. Nass and Margie Patlak, Rapporteurs National Cancer Policy Forum Board on Health Care Services

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THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 NOTICE: The workshop that is the subject of this workshop summary was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. This project was co-sponsored by the National Cancer Policy Forum and the LIVESTRONG Foundation, with support from Critical Mass: The Young Adult Cancer Alliance. The National Cancer Policy Forum is supported by Contract Nos. HHSN261200900003C and 200-2011-38807 between the National Academy of Sci- ences and the National Cancer Institute and the Centers for Disease Control and Preven- tion, respectively, and by the American Association for Cancer Research, the American Cancer Society, the American Society for Radiation Oncology, the American Society of Clinical Oncology, the Association of American Cancer Institutes, Bristol-Myers Squibb, C-Change, the CEO Roundtable on Cancer, GlaxoSmithKline, the LIVESTRONG Foundation, Novartis Oncology, the Oncology Nursing Society, and Sanofi Oncology. The views presented in this publication do not necessarily reflect the views of the orga- nizations or agencies that provided support for the activity. International Standard Book Number-13:  978-0-309-29441-6 International Standard Book Number-10:  0-309-29441-X Additional copies of this workshop summary are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624- 6242 or (202) 334-3313; http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2013 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2013. Identifying and addressing the needs of adolescents and young adults with cancer: Workshop summary. Washington, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe Advising the Nation. Improving Health.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a man- date that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the ­ ational Academy of Engineering in providing services to the government, the public, N and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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WORKSHOP PLANNING COMMITTEE1 Brenda Nevidjon (Co-Chair), Clinical Professor and Specialty Director, Nursing & Healthcare Leadership, Duke University School of Nursing, Durham, NC, and Past President, Oncology Nursing Society RUTH RECHIS (Co-Chair), Vice President of Programs, LIVESTRONG Foundation, Austin, TX Lynda Beaupin, Assistant Professor of Oncology, Roswell Park Cancer Institute, Buffalo, NY Wendy Demark-Wahnefried, Associate Director for Cancer Prevention and Control, University of Alabama at Birmingham Comprehensive Cancer Center Karen Fasciano, Instructor in Psychiatry, Harvard Medical School, Director of the Young Adult Program, Dana-Farber Cancer Institute, Boston, MA PATRICIA A. GANZ, Professor, University of California, Los Angeles, School of Medicine & Public Health, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center BRANDON HAYES-LATTIN, Medical Director, Oregon Health & Science University Knight Cancer Institute, Adolescent and Young Adult Oncology Program, Portland, OR MELISSA HUDSON, Director, Cancer Survivorship Division, Co-Leader, Cancer Prevention & Control Program, St. Jude Children’s Research Hospital, Memphis, TN KEVIN C. OEFFINGER, Director, Adult Long-Term Follow-Up Program, Memorial Sloan-Kettering Cancer Center, New York, NY Lisa C. Richardson, Director, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA NITA SEIBEL, Head, Pediatric Solid Tumors, Clinical Investigations Branch, Cancer Treatment and Evaluation Program, National Cancer Institute, Bethesda, MD ASHLEY SMITH, Behavioral Scientist, Outcomes Research Branch, Applied Research Program, National Cancer Institute, Bethesda, MD 1  Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v

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Project Staff SHARYL j. NASS, Director, National Cancer Policy Forum Erin Balogh, Associate Program Officer PAMELA LIGHTER, Research Assistant (through September 2013) SARA THARAKAN, Research Assistant (from November 2013) Michael Park, Senior Program Assistant (through August 2013) Hannah During, Senior Program Assistant (from July 2013) vi

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NATIONAL CANCER POLICY FORUM1 JOHN MENDELSOHN (Chair), Director, Khalifa Institute for Personalized Cancer Therapy, MD Anderson Cancer Center, Houston, TX PATRICIA A. GANZ (Vice Chair), Professor, University of California, Los Angeles, School of Medicine & Public Health, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center Amy P. Abernethy, Associate Professor of Medicine, Duke University School of Medicine, and Director, Duke Cancer Care Research Program, Durham, NC RAFAEL G. AMADO, Senior Vice President & Head of R&D, GlaxoSmithKline Oncology, Collegeville, PA FRED APPELBAUM, Director, Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA PETER B. BACH, Attending Physician, Memorial Sloan-Kettering Cancer Center, New York, NY EDWARD BENZ, JR., President, Dana-Farber Cancer Institute and Director, Harvard Cancer Center, Harvard School of Medicine, Boston, MA Monica Bertagnolli, Professor of Surgery, Harvard University Medical School, Boston, MA OTIS BRAWLEY, Chief Medical Officer and Executive Vice President, American Cancer Society, Atlanta, GA Michael A. Caligiuri, Director, Ohio State Comprehensive Cancer Center, Columbus RENZO CANETTA, Vice President, Oncology Global Clinical Research, Bristol-Myers Squibb, Wallingford, CT Michaele Chamblee Christian, Retired, Washington, DC william dalton, CEO, M2Gen Personalized Medicine Institute, Moffitt Cancer Center, Tampa, FL, and Chair, American Association for Cancer Research Science Policy & Legislative Affairs Committee 1  Institute of Medicine forums and roundtables do not issue, review, or approve indi- vidual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vii

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Wendy Demark-Wahnefried, Associate Director for Cancer Prevention and Control, University of Alabama at Birmingham Comprehensive Cancer Center Robert Erwin, President, Marti Nelson Cancer Foundation, Davis, Ca Carol Hahn, Associate Professor of Radiation Oncology, Duke University Medical Center, Durham, NC, Medical Director of Radiation Oncology, Duke Raleigh Hospital, Raleigh, NC, Clinical Affairs and Quality Council Chair, American Society for Radiation Oncology ROY S. HERBST, Chief of Medical Oncology, Yale Cancer Center, New Haven, CT THOMAS J. KEAN, President and CEO, C-Change, Washington, DC Michelle M. Le Beau, Arthur and Marian Edelstein Professor of Medicine, Director, Comprehensive Cancer Center, University of Chicago, IL, and President, Association of American Cancer Institutes Douglas R. Lowy, Deputy Director, National Cancer Institute, Bethesda, MD Daniel R. Masys, Affiliate Professor, Biomedical Informatics, University of Washington, Seattle Ann C. Miller, Vice President, Global Marketing, Sanofi Oncology, Cambridge, MA Martin J. Murphy, Chief Executive Officer, CEO Roundtable on Cancer, Durham, NC Brenda Nevidjon, Clinical Professor and Specialty Director, Nursing & Healthcare Leadership, Duke University School of Nursing, Durham, NC, and Past President, Oncology Nursing Society Steven Piantadosi, Director, Samuel Oschin Comprehensive Cancer Institute, Cedars-Sinai Medical Center, Los Angeles, CA RUTH RECHIS, Vice President of Programs, LIVESTRONG Foundation, Austin, TX Lisa C. Richardson, Director, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA Ya-Chen Tina Shih, Director, Program in the Economics of Cancer, University of Chicago, IL viii

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Ellen Sigal, Chairperson and Founder, Friends of Cancer Research, Washington, DC STEVEN STEIN, Senior Vice President, U.S. Clinical Development and Medical Affairs, Novartis Oncology, East Hanover, NJ John A. Wagner, Vice President, Clinical Pharmacology, Merck and Company, Inc., Rahway, NJ Ralph R. Weichselbaum, Chair, Radiation and Cellular Oncology, and Director, Ludwig Center for Metastasis Research, University of Chicago Medical Center, IL JANET WOODCOCK, Director, Center for Drug Evaluation and Research, Food and Drug Administration, Rockville, MD National Cancer Policy Forum Staff Sharyl J. Nass, Director Laura Levit, Program Officer Erin Balogh, Associate Program Officer PAMELA LIGHTER, Research Assistant (through September 2013) SARA THARAKAN, Research Assistant (from November 2013) Michael Park, Senior Program Assistant (through August 2013) Hannah During, Senior Program Assistant (from July 2013) Cher Huang, Intern, MIT in Washington Program (Summer 2013) Patrick Burke, Financial Associate Sharon B. Murphy, Scholar in Residence Roger Herdman, Director, Board on Health Care Services ix

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Reviewers This workshop summary has been reviewed in draft form by individu- als chosen for their diverse perspectives and technical expertise, in accor- dance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published workshop summary as sound as possible and to ensure that the workshop summary meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We wish to thank the following individuals for their review of this workshop summary: Rebecca Block, Oregon Health and Science University Knight Cancer Institute Sage Bolte, Inova Health System Jacqueline Casillas, University of California, Los Angeles (UCLA) Pediatric Cancer Survivorship Program and UCLA Daltrey/ Towshend Teen and Young Adult Oncology Program Kevin Krull, St. Jude Children’s Research Hospital Robin Yabroff, National Cancer Institute xi

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xii REVIEWERS Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this report was overseen by Ellen R. Gritz, The University of Texas MD Anderson Cancer. Appointed by the Institute of Medicine, she was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully con- sidered. Responsibility for the final content of this report rests entirely with the rapporteurs and the institution.

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Acknowledgments We thank the LIVESTRONG Foundation for generously co-sponsoring this workshop and Critical Mass: The Young Adult Cancer Alliance for supporting the workshop. Support from the many annual sponsors of the Institute of Medicine’s National Cancer Policy Forum is crucial to the work of the Forum. Federal sponsors are the National Cancer Institute and the Centers for Disease Control and Prevention. Non-federal sponsors include the American Association for Cancer Research, the American Cancer Soci- ety, the American Society for Radiation Oncology, the American Society of Clinical Oncology, the Association of American Cancer Institutes, Bristol- Myers Squibb, C-Change, the CEO Roundtable on Cancer, GlaxoSmith- Kline, the LIVESTRONG Foundation, Novartis Oncology, the Oncology Nursing Society, and Sanofi Oncology. The Forum wishes to express its gratitude to the expert speakers whose presentations helped define the challenges and opportunities in addressing the needs of adolescents and young adults with cancer. The Forum also wishes to thank the members of the planning committee for their work in developing an excellent workshop agenda. xiii

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Contents Introduction, 1 AYA Cancer Biology and Trends, 3 Progress Since the NCI Progress Review Group Report and Implementation Plan, 7 Identifying the Unique Cancer Burden in the AYA Population, 8 Education, Training, and Communication, 8 Tools, 9 Service Delivery, 10 Patient Advocacy and Support, 10 Psychosocial Aspects of AYA Cancer Diagnosis and Treatment, 11 Family Dynamics, 13 Disruption of School, Work, or Career Plans, 13 Psychological Challenges, 15 Social Issues, 16 Late and Long-Term Side Effects of Treatment, 16 Infertility and Efforts to Preserve Fertility, 20 Male Fertility, 21 Female Fertility, 23 Insurance Coverage of Fertility Preservation and Treatments, 25 Oncology Care Issues Unique to AYAs, 26 Pediatric or Adult Care, 26 Care Transitions, 27 xv

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xvi CONTENTS Extent of Family Involvement, 31 Communications with AYA Patients, 31 Unmet Needs of AYAs with Cancer, 33 Screening/Surveillance for Cancer in AYA Survivors, 36 Lifestyle Challenges and Interventions, 40 Diet, 40 Physical Activity, 40 Lifestyle Intervention Programs, 41 Substance Abuse, 42 Palliative Care, 44 Advance Care Planning, 47 End-of-Life Care Challenges, 47 Health Care Insurance Challenges, 50 Affordable Care Act, 52 Models of Care and Support, 53 Education Needs for Health Care Professionals, 55 Research Gaps, 58 Research Challenges, 59 Research Opportunities, 61 Policy Opportunities, 62 Wrap-Up, 63 References, 65 Acronyms, 71 Appendix: Workshop Statement of Task and Agenda, 73

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Boxes, Figures, and Tables BOXES 1 Suggestions Made by Individual Workshop Participants, 4 2 NCI Progress Review Group Recommendations, 8 3 Examples of Care Programs for AYA Patients with Cancer, 56 FIGURES 1  Relative frequency of the common types of cancers in adolescents (A) and young adults, aged 15–39, 1992–2002, and (B) the prevalence of cancer histology by age, 6 2 Possible life disruptions for AYA patients with cancer, 11 3  Cumulative incidence of solid cancers among 5-year survivors of Hodgkin’s lymphoma (HL) compared with controls of the same age in the general population (GP), 20 4  LIFE Cancer Survivorship and Transition Program at Children’s Hos- pital Los Angeles, 30 5 Embedded expert model of palliative care integration across the care continuum, 46 xvii

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xviii BOXES, FIGURES, AND TABLES TABLES 1  Potential Late Effects of Cancer Treatment, by System and Exposure, 18 2 Coping Strategies Employed by AYAs (n=98) for Death Anxiety and Grief, 49