Photographs on the cover are provided courtesy of the Lance Armstrong Foundation. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer Report of the Adolescent and Young Adult Oncology Progress Review Group U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Cancer Institute LIVESTRONG™ Young Adult Alliance Report of the Adolescent and Young Adult Oncology Progress Review Group FROM THE ADOLESCENT AND YOUNG ADULT ONCOLOGY PROGRESS REVIEW GROUP It is our great privilege to submit this Report of the Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) to the Advisory Committee to the Director of the National Cancer Institute (NCI). This document is the product of an innovative, collaborative effort, the fi rst public-private partnership of its kind, between NCI and the Lance Armstrong Foundation (LAF). The nation’s leading researchers and clinicians in adolescent and young adult oncology joined with cancer survivors, advocates, pediatricians, gerontologists, disease-specifi c experts, statisticians, and insurance and pharmaceutical industry representatives to develop recommendations for a national agenda to advance adolescent and young adult oncology. The AYAO PRG is only the second PRG not to be disease- specifi c, and the cross-disciplinary nature of this collaboration is refl ected in the diversity of its membership. We hope this report will raise the awareness of the health care and research communities and the general public to the reality of cancer as a major health problem in this population and the unique challenges faced by adolescents and young adults diagnosed with cancer. We fully expect the recommendations in the report to act as catalysts for future programs and initiatives. An implementation meeting, sponsored by the LIVESTRONG™ Young Adult Alliance, has been arranged to discuss how these recommendations can most effectively and effi ciently be realized to improve the outcomes and quality of life for adolescents and young adults with cancer. We look forward eagerly to this discussion and the development of concrete strategies for action. Karen Albritton, M.D. Michael Caligiuri, M.D. Barry Anderson, M.D., Ph.D. PRG Co-Chair PRG Co-Chair PRG Executive Director Cherie Nichols, M.B.A. Doug Ulman National Cancer Institute Lance Armstrong Foundation Representative Representative Report of the Adolescent and Young Adult Oncology Progress Review Group PRG Members Heidi Adams Brad Pollock, M.P.H., Ph.D. Lodovico Balducci, M.D. Amelie G. Ramirez, Dr.P.H.Dr.P.H. Ronald D. Barr, M.B. Ch.B., M.D. Lynn Ries, M.S. Archie Bleyer, M.D. Lorna Rodriguez-Rodriguez, M.D., Ph.D. Maryann Carousso, F.N.P.,F.N.P., R.N. Lydia A. Shrier, M.D., M.P.H. WilliamWilliam J. Hicks, M.D. Muneesh Tewari, M.D., Ph.D. Marion Lee, M.P.H., Ph.D. Beth Virnig,Virnig, Ph.D., M.P.H.M.P.H. StevenSteven M. Lipkin, M.D., Ph.D. Karen Weiss,Weiss, M.D. Mary S. McCabe, R.N. Bruce Williams Michael L. Moore, M.D. Brock YetsoYetso Peter Pisters, M.D. Brad Zebrack, Ph.D. Report of the Adolescent and Young Adult Oncology Progress Review Group ACKNOWLEDGMENTS The Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) process has been a collaborative effort of the National Cancer Institute (NCI) and the Lance Armstrong Foundation (LAF) involving contributions from numerous people with different backgrounds, skills, and talents. The AYAO PRG wishes to acknowledge and extend special thanks to the following groups and individuals: • The many scientists, clinicians, advocates, and other professionals who generously gave of their time and knowledge. Without their participation, this report would not have been possible. In particular, we acknowledge the participants in our AYAO PRG Roundtable meeting and the extraordinary efforts of not only the PRG members and Co-Chairs but the non-PRG Co-Chairs of our Roundtable Breakout Groups—Marjorie Kagawa Singer, Kimberly Calder, Smita Bhatia, William Carroll, Robert Comis, Jennifer Ford, Carolyn Gotay, Brandon Hayes-Lattin, Robert Hiatt, Sandra Horning, Ian Lewis, Joan McClure, Kevin Oeffi nger, Joseph San Filippo, and Carol Somkin. • The staff of the NCI Offi ce of Science Planning and Assessment, under the leadership of Cherie Nichols, who provided ongoing guidance, technical support, and encouragement throughout the process. In particular, we acknowledge the hard work and dedication of Anne Tatem, Joy Wiszneauckas, Jamelle Banks, and Julie Mendelsohn. • The staff at LAF, led by Doug Ulman, who provided coordination and ongoing support in all phases of the AYAO PRG process. We would like to recognize the hard work of David Lyon, Tina Hamilton, Claire Neal, Schlonge Dermody, and Devon McGoldrick. We look forward to their efforts in moving the recommendations into action through the work of the LIVESTRONG™ Young Adult Alliance and by convening the Implementation meeting with experts of the oncology community. • Beth Mathews-Bradshaw at Science Applications International Corporation (SAIC) for her hard work, dedication, and meticulous attention to detail while coordinating this effort to keep the PRG focused and on target. • The staff of SAIC who assisted in logistics, documentation, and breakout session report preparation: Karen Rulli and Adeyinka Smith for preparing portfolio analyses and resource materials; Rob Watson for conference support; Deborah Berlyne, Adam Book, Greg Cole, Maneesha James, Eric Levine, Sabina Robinson, Karen Rulli, Anita Sabourin, Heather Sansbury, and Pamela Zingeser for serving as science writers; and Jennifer Secula and Julie Jessup for their expertise related to the design, layout, and editing of the report. • Suzanne Reuben of Progressive Health Systems, who, as lead science writer, worked steadfastly in crafting this report. • Janis Mullaney at the Foundation for the National Institutes of Health (NIH) for her help in establishing the NCI/LAF public-private partnership. • NOVA Research, in particular, Ben Neal, for developing and maintaining the AYAO PRG Web site. • Lynn Ries of the NCI Division of Cancer Control and Population Sciences for her tireless efforts generating Surveillance, Epidemiology, and End Results (SEER) data for the report. Report of the Adolescent and Young Adult Oncology Progress Review Group TABLE OF CONTENTS Executive Summary ................................................................................................................................................... i Introduction ............................................................................................................................................................... 1 Impetus for the Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) .......................... 1 The PRG Process ................................................................................................................................................ 1 The AYAO PRG ................................................................................................................................................... 2 Cancer in the Adolescent and Young Adult (AYA) Population ............................................................................. 3 AYAs Defi ned ....................................................................................................................................................... 3 Cancers Affecting the AYA Population ................................................................................................................. 6 Factors Limiting Progress Against Cancer in the AYA Population ....................................................................... 6 Recommendations ...................................................................................................................................................11 Conclusion .............................................................................................................................................................. 19 Appendices Appendix A: Roster of AYAO PRG Participants ..............................................................................................A-1 Appendix B: Breakout Group Reports .............................................................................................................B-1 Appendix C: Charge to the AYAO PRG .......................................................................................................... C-1 Appendix D: Average Annual Percentage Change in 5-Year Relative Survival of Patients Diagnosed with Cancer During 1975-1997, Selected Diseases, U.S. SEER ............................ D-1 Appendix E: Glossary of Terms and Acronyms ...............................................................................................E-1 Report of the Adolescent and Young Adult Oncology Progress Review Group EXECUTIVE SUMMARY Relatively little is known about biologic, genetic, leukemia, colorectal carcinoma, and central nervous epidemiologic, therapeutic, psychosocial, and system tumors. However, the incidence of specifi c economic factors that affect the incidence, disease cancer types varies considerably across the AYA age outcomes, and quality of life of adolescents and young continuum. For example, among younger AYAs (15 adults (AYAs) diagnosed with cancer. However, it to 19 year-olds), lymphomas, germ cell tumors, and is known that compared with younger and older age leukemias account for the largest percentages of all groups, this population—defi ned as those diagnosed