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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

LONG-TERM
SURVIVORSHIP CARE
AFTER CANCER TREATMENT

PROCEEDINGS OF A WORKSHOP

Laura Aiuppa, Maria Hewitt, and Sharyl J. Nass, Rapporteurs

National Cancer Policy Forum

Board on Health Care Services

Health and Medicine Division

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THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was supported by Contract No. 200-2011-38807 (Task Order No. 0051) and Contract No. HHSN263201200074I (Task Order No. HHSN26300120) with the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health, respectively, and by the American Association for Cancer Research, American Cancer Society, American College of Radiology, American Society of Clinical Oncology, American Society of Hematology, Association of American Cancer Institutes, Bristol-Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Helsinn Therapeutics (U.S.), Inc., LIVESTRONG Foundation, Merck, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Pfizer Inc. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

International Standard Book Number-13: 978-0-309-47298-2
International Standard Book Number-10: 0-309-47298-9
Digital Object Identifier: https://doi.org/10.17226/25043

Copyright 2018 by the National Academy of Sciences. All rights reserved.

Printed in the United States of America

Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2018. Long-term survivorship care after cancer treatment: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/25043.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

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The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.

The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president.

The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.

Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

images

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.

Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies.

For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

WORKSHOP PLANNING COMMITTEE1,2

PATRICIA A. GANZ (Co-Chair), Distinguished Professor of Health Policy, Management and Medicine, Director, Center for Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center, University of California, Los Angeles

RONALD M. KLINE (Co-Chair), Medical Officer, Patient Care Models Group, Center for Medicare & Medicaid Innovation, Centers for Medicare & Medicaid Services

NEERAJ K. ARORA, Associate Director, Healthcare Delivery and Disparities Research Program, Patient-Centered Outcomes Research Institute

CATHY J. BRADLEY, Associate Director, Cancer Prevention and Control, University of Colorado Cancer Center

R. ADAMS DUDLEY, Professor of Medicine and Health Policy, Director, Center for Healthcare Value, University of California, San Francisco

DARCI L. GRAVES, Special Assistant to the Director, Office of Minority Health, Centers for Medicare & Medicaid Services

LEE M. KRUG, Disease Area Head, Lung and Head & Neck Cancer, Immuno-Oncology, Bristol-Myers Squibb

NATASHA BUCHANAN LUNSFORD, Behavioral Scientist, Epidemiology and Applied Research Branch, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention

GRETA MASSETTI, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention

MARY S. MCCABE, former Clinical Director, Survivorship Center, Memorial Sloan Kettering Cancer Center

SHELLEY FULD NASSO, Chief Executive Officer, National Coalition for Cancer Survivorship

___________________

1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.

2 At the time of publication, Greta Massetti is a senior scientist in the Division of Violence Prevention at the National Center for Injury Prevention and Control at the Centers for Disease Control and Prevention; Julia Rowland is the senior strategic advisor at the Smith Center for Healing and the Arts; and Rebekkah Schear is the associate director of patient experience at the LIVESTRONG Cancer Institutes at the Dell Medical School of The University of Texas at Austin.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

LARISSA NEKHLYUDOV, Associate Professor, Harvard Medical School; Medical Director and Internist, Brigham and Women’s Hospital Primary Care Associates; Clinical Director, Internal Medicine for Cancer Survivors, Dana-Farber Cancer Institute

JULIA H. ROWLAND, Director, Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute

REBEKKAH M. SCHEAR, Director of Mission Delivery, LIVESTRONG Foundation

RICHARD L. SCHILSKY, Senior Vice President and Chief Medical Officer, American Society of Clinical Oncology

WENDY A. WOODWARD, Associate Professor and Service Chief, Clinical Breast Radiation, Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center

Project Staff

LAURA AIUPPA, Senior Program Officer (from December 2017)

ERIN BALOGH, Senior Program Officer

SYLARA MARIE CRUZ, Senior Program Assistant (until April 2017)

NATALIE LUBIN, Senior Program Assistant (from June 2017)

CYNDI TRANG, Research Assistant

SHARYL J. NASS, Director, National Cancer Policy Forum

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

NATIONAL CANCER POLICY FORUM1

EDWARD J. BENZ, JR. (Chair), President and Chief Executive Officer Emeritus, Dana-Farber Cancer Institute; Richard and Susan Smith Distinguished Professor of Medicine, Genetics and Pediatrics, Harvard Medical School

AMY P. ABERNETHY, Chief Medical Officer, Chief Scientific Officer, and Senior Vice President, Oncology, Flatiron Health

LUCILE L. ADAMS-CAMPBELL, Professor of Oncology, Associate Director for Minority Health and Health Disparities Research, Georgetown University Lombardi Cancer Center

GARNET L. ANDERSON, Senior Vice President and Director, Public Health Sciences Division, Fred Hutchinson Cancer Research Center; Affiliate Professor, Department of Biostatistics, University of Washington

KENNETH ANDERSON, Kraft Family Professor of Medicine, American Cancer Society Clinical Research Director, Jerome Lipper Multiple Myeloma Center, Harvard Medical School, Dana-Farber Cancer Institute

KAREN BASEN-ENGQUIST, Annie Laurie Howard Research Distinguished Professor, Professor of Behavioral Science, and Director, Center for Energy Balance in Cancer Prevention and Survivorship, The University of Texas MD Anderson Cancer Center

CATHY J. BRADLEY, Associate Director, Cancer Prevention and Control, University of Colorado Cancer Center

OTIS W. BRAWLEY, Chief Medical Officer, American Cancer Society

ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network

CHRISTOPHER R. COGLE, Professor of Medicine, Pierre Chagnon Professor of Stem Cell Biology and Bone Marrow Transplant, University of Florida; Scholar in Clinical Research, Leukemia & Lymphoma Society

___________________

1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
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NANCY E. DAVIDSON, President and Executive Director, Seattle Cancer Care Alliance; Senior Vice President, Director, and Full Member, Clinical Research Division, Fred Hutchinson Cancer Research Center; Head, Department of Medicine, Division of Medical Oncology, University of Washington

GEORGE D. DEMETRI, Professor of Medicine and Director, Ludwig Center, Harvard Medical School; Senior Vice President for Experimental Therapeutics, Dana-Farber Cancer Institute; Associate Director for Clinical Sciences, Dana-Farber/Harvard Cancer Center

JAMES H. DOROSHOW, Deputy Director for Clinical and Translational Research, National Cancer Institute

NICOLE F. DOWLING, Associate Director, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention

SCOT W. EBBINGHAUS, Vice President and Therapeutic Area Head, Oncology Clinical Research, Merck Research Laboratories

KOJO S. J. ELENITOBA-JOHNSON, Professor, Perelman School of Medicine; Director, Center for Personalized Diagnostics and Division of Precision and Computational Diagnostics, University of Pennsylvania

STANTON L. GERSON, President, Association of American Cancer Institutes; Director, Case Comprehensive Cancer Center; Professor of Hematological Oncology, Case Western Reserve University; Director, University Hospitals Seidman Cancer Center

LORI HOFFMAN HŌGG, Veterans Health Administration National Oncology Clinical Advisor and Program Manager, Prevention Policy, Department of Veterans Affairs

LINDA HOUSE, President, Cancer Support Community

HEDVIG HRICAK, Chair, Department of Radiology, Memorial Sloan Kettering Cancer Center

LISA KENNEDY SHELDON, Chief Clinical Officer, Oncology Nursing Society

SAMIR N. KHLEIF, Director, Loop Immuno-Oncology Lab, Biomedical Scholar, and Professor of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center

RONALD M. KLINE, Medical Officer, Patient Care Models Group, Center for Medicare & Medicaid Innovation, Centers for Medicare & Medicaid Services

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

LEE M. KRUG, Disease Area Head, Lung and Head & Neck Cancer, Immuno-Oncology, Bristol-Myers Squibb

MICHELLE M. LE BEAU, Arthur and Marian Edelstein Professor of Medicine and Director, The University of Chicago Comprehensive Cancer Center

MIA LEVY, Director, Cancer Health Informatics and Strategy; Ingram Associate Professor of Cancer Research; Associate Professor of Biomedical Informatics and Medicine, Vanderbilt-Ingram Cancer Center

MARTIN J. MURPHY, Chief Executive Officer, CEO Roundtable on Cancer

RICHARD PAZDUR, Director, Oncology Center of Excellence; Acting Director, Office of Hematology and Oncology Products, Food and Drug Administration

MACE L. ROTHENBERG, Chief Development Officer, Oncology, Pfizer Global Product Development, Pfizer Inc.

RICHARD L. SCHILSKY, Senior Vice President and Chief Medical Officer, American Society of Clinical Oncology

DEBORAH SCHRAG, Chief, Division of Population Sciences, Professor of Medicine, Department of Medical Oncology, Harvard Medical School, Dana-Farber Cancer Institute

LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania

DAN THEODORESCU, Paul A. Bunn, Jr. Endowed Chair in Cancer Research, Professor of Surgery and Pharmacology, and Director, University of Colorado Cancer Center

VERENA VOELTER, Head, United States Oncology Clinical Development & Medical Affairs, Novartis Pharmaceuticals Corporation

GEORGE J. WEINER, C.E. Block Chair of Cancer Research, Professor of Internal Medicine, and Director, Holden Comprehensive Cancer Center, The University of Iowa

ROBERT A. WINN, Associate Vice Chancellor, Community Based-Practice; Professor of Medicine, Division of Pulmonary and Critical Care Medicine, University of Illinois at Chicago; Director, University of Illinois Health Cancer Center

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

National Cancer Policy Forum Staff

ERIN BALOGH, Senior Program Officer

PATRICK BURKE, Financial Officer

SYLARA MARIE CRUZ, Senior Program Assistant (until April 2017)

NATALIE LUBIN, Senior Program Assistant (from June 2017)

KELLY SINGEL, Mirzayan Science and Technology Policy Fellow (January 2018–April 2018)

CYNDI TRANG, Research Assistant

SHARYL J. NASS, Forum Director, and Director, Board on Health Care Services

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

Reviewers

This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.

We thank the following individuals for their review of this proceedings:

TIM AHLES, Memorial Sloan Kettering Cancer Center

BARBARA L. ANDERSEN, The Ohio State University

TARA HENDERSON, The University of Chicago

LAURIE ISENBERG, National Coalition for Cancer Survivorship

DEBORAH MAYER, University of North Carolina Lineberger Comprehensive Cancer Center

BRADLEY ZEBRACK, University of Michigan

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by SHELDON GREENFIELD, University

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
×

of California, Irvine, Health Policy Research Institute. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
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Acknowledgments

Support from the many annual sponsors of the National Academies of Sciences, Engineering, and Medicine’s National Cancer Policy Forum is crucial to the work of the forum. Federal sponsors include the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health. Nonfederal sponsors include the American Association for Cancer Research, American Cancer Society, American College of Radiology, American Society of Clinical Oncology, American Society of Hematology, Association of American Cancer Institutes, Bristol-Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Helsinn Therapeutics (U.S.), Inc., LIVESTRONG Foundation, Merck, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Pfizer Inc.

The forum wishes to express its gratitude to the expert speakers whose presentations helped further the dialogue and advance progress in improving cancer survivorship care. The forum also wishes to thank the members of the planning committee for their work in developing an excellent workshop agenda.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
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Acronyms and Abbreviations

ABIM American Board of Internal Medicine
ACA Patient Protection and Affordable Care Act
ACS American Cancer Society
ADA Americans with Disabilities Act
AHRQ Agency for Healthcare Research and Quality
ASCO American Society of Clinical Oncology
AYA adolescents and young adults
BRCA BReast CAncer gene
CCSS Childhood Cancer Survivor Study
CDC Centers for Disease Control and Prevention
CFIR Consolidated Framework for Implementation Research
CIOS Center for Integrative Oncology and Survivorship
CMMI Center for Medicare & Medicaid Innovation
CMS Centers for Medicare & Medicaid Services
CoC Commission on Cancer
CT computed tomography
EEOC U.S. Equal Employment Opportunity Commission
EHR electronic health record
ER estrogen receptor
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
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FMLA Family and Medical Leave Act
GW George Washington University
IDEA Individuals with Disabilities Education Act
IOM Institute of Medicine
MEPS Medical Expenditure Panel Survey
MI myocardial infarction
NCCN National Comprehensive Cancer Network
NCCS National Coalition for Cancer Survivorship
NCI National Cancer Institute
NIH National Institutes of Health
OCM Oncology Care Model
ONS Oncology Nursing Society
PET positron emission tomography
PRO patient-reported outcome
QOPI® Quality Oncology Practice Initiative
RE-AIM Reach, Effectiveness, Adoption, Implementation, and Maintenance
REM rapid eye movement
SPRINT SPeeding Research-tested INTerventions
VA Department of Veterans Affairs
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25043.
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The 2006 Institute of Medicine (IOM) consensus study report From Cancer Patient to Cancer Survivor: Lost in Transition made recommendations to improve the quality of care that cancer survivors receive, in recognition that cancer survivors are at risk for significant physical, psychosocial, and financial repercussions from cancer and its treatment. Since then, efforts to recognize and address the unique needs of cancer survivors have increased, including an emphasis on improving the evidence base for cancer survivorship care and identifying best practices in the delivery of high-quality cancer survivorship care.

To examine progress in cancer survivorship care since the Lost in Transition report, the National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine held a workshop in July 2017, in Washington, DC. Workshop participants highlighted potential opportunities to improve the planning, management, and delivery of cancer survivorship care. This publication summarizes the presentations and discussions from the workshop.

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