Addressing the
Adverse Consequences
of Cancer Treatment
PROCEEDINGS OF A WORKSHOP
Francis Amankwah, Margie Patlak, and Sharyl Nass, Rapporteurs
National Cancer Policy Forum
and
Forum on Aging, Disability, and Independence
Board on Health Care Services
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by Contract No. 200-2011-38807 (Task Order No. 75D30120F00089) and Contract No. HHSN263201800029I (Task Order No. HHSN26300008) 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, Association of American Cancer Institutes, Association of Community Cancer Centers, Bristol Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Merck, National Comprehensive Cancer Network, National Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Pfizer Inc., Sanofi, and Society for Immunotherapy of Cancer. 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: 978-0-309-27082-3
International Standard Book Number-10: 0-309-27082-0
Digital Object Identifier: https://doi.org/10.17226/26365
Additional copies of this publication are available 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.
Copyright 2022 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. 2022. Addressing the adverse consequences of cancer treatment: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26365.
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. John L. Anderson 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.
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.
WORKSHOP PLANNING COMMITTEE1
CATHY J. BRADLEY (Co-Chair), David F. and Margaret Turley Grohne Chair for Cancer Prevention and Control Research; Professor and Associate Dean for Research, Colorado School of Public Health; Bunn Chair of Cancer Research and Deputy Director, University of Colorado Comprehensive Cancer Center
LISA KENNEDY SHELDON (Co-Chair), Clinical and Scientific Affairs Liaison, Oncology Nursing Society; and Oncology Nurse Practitioner, St. Joseph Hospital
SMITA BHATIA, Professor and Vice Chair, Department of Pediatrics; Gay and Bew White Endowed Chair in Pediatric Oncology; Director, Institute for Cancer Outcomes and Survivorship; and Associate Director for Outcomes Research, Comprehensive Cancer Center, The University of Alabama at Birmingham
JULIE BYNUM, Margaret Terpenning Collegiate Professor of Medicine and Vice Chair for Faculty Affairs, Department of Internal Medicine, Division of Geriatric and Palliative Medicine; Geriatric Center Associate Director for Health Policy and Research; and Research Scientist, Institute of Gerontology, University of Michigan Medical School
GWEN DARIEN, Executive Vice President, Patient Advocacy and Engagement, National Patient Advocate Foundation
LORI HOFFMAN HÖGG, Veterans Health Administration National Oncology Clinical Advisor, Office of Nursing Services, Department of Veterans Affairs, Washington, DC; and Veterans Health Administration National Program Manager, Prevention Policy, National Center for Health Promotion and Disease Prevention
SAMIR N. KHLEIF, Director, Jeannie and Tony Loop ImmunoOncology Lab; Biomedical Scholar; and Professor of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center; and Member, Society for Immunotherapy of Cancer
___________________
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.
WUI-JIN KOH, Senior Vice President and Chief Medical Officer, National Comprehensive Cancer Network; Medical Director, Radiation Oncology, Fred Hutchinson Cancer Research Center, Seattle Cancer Care Alliance; and Professor, Radiation Oncology, University of Washington School of Medicine
J. LEONARD LICHTENFELD, Independent Consultant
RANDALL A. OYER, Medical Director, Oncology, Ann B. Barshinger Cancer Institute; Medical Director, Cancer Risk Evaluation Program, Penn Medicine Lancaster General Health; and Immediate Past President, Association of Community Cancer Centers
LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
Project Staff
FRANCIS AMANKWAH, Program Officer
RACHEL AUSTIN, Senior Program Assistant
LORI BENJAMIN BRENIG, Research Associate
MICHAEL COVINGTON, Senior Program Assistant (from September 2020–October 2020)
ZARIA FYFFE, Senior Program Assistant (for October 2020)
ANNALEE GONZALES, Administrative Assistant
MICAH WINOGRAD, Senior Finance Business Partner
TRACY LUSTIG, Director, Forum on Aging, Disability, and Independence
ERIN BALOGH, Co-Director, National Cancer Policy Forum
SHARYL J. NASS, Co-Director, National Cancer Policy Forum, and Senior Director, Board on Health Care Services
NATIONAL CANCER POLICY FORUM1
EDWARD J. BENZ, JR. (Chair), President and Chief Executive Officer, Emeritus, Dana-Farber Cancer Institute; and Richard and Susan Smith Distinguished Professor of Medicine, Genetics and Pediatrics, Harvard Medical School
PETER C. ADAMSON, Global Head, Oncology Development and Pediatric Innovation, Sanofi
GARNET L. ANDERSON, Senior Vice President and Director, Public Health Sciences Division, Fred Hutchinson Cancer Research Center; Principal Investigator, Clinical Coordinating Center, Women’s Health Initiative; and Affiliate Professor, Department of Biostatistics, University of Washington
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
SMITA BHATIA, Professor and Vice Chair, Department of Pediatrics; Gay and Bew White Endowed Chair in Pediatric Oncology; Director, Institute for Cancer Outcomes and Survivorship; and Associate Director for Outcomes Research, Comprehensive Cancer Center, The University of Alabama at Birmingham
CHRIS BOSHOFF, Chief Development Officer, Oncology, Global Product Development, Pfizer Inc.
CATHY J. BRADLEY, David F. and Margaret Turley Grohne Chair for Cancer Prevention and Control Research; Professor and Associate Dean for Research, Colorado School of Public Health; Bunn Chair of Cancer Research and Deputy Director, University of Colorado Comprehensive Cancer Center
OTIS W. BRAWLEY, Bloomberg Distinguished Professor, Department of Epidemiology, Bloomberg School of Public Health and Department of Oncology, School of Medicine, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University
___________________
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.
CYNTHIA BROGDON, Head, U.S. Oncology Portfolio Strategy, Bristol Myers Squibb
WILLIAM G. CANCE, Chief Medical and Scientific Officer, American Cancer Society
ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network
CHRISTINA CHAPMAN, Assistant Professor of Radiation Oncology, University of Michigan
GWEN DARIEN, Executive Vice President, Patient Advocacy and Engagement, National Patient Advocate Foundation
NANCY E. DAVIDSON, President and Executive Director, Seattle Cancer Care Alliance; Raisbeck Endowed Chair for Collaborative Research, Senior Vice President, Director, and Professor, Clinical Research Division, Fred Hutchinson Cancer Research Center; and Head, Department of Medicine, Division of Medical Oncology, University of Washington
JAMES H. DOROSHOW, Director, Division of Cancer Treatment and Diagnosis; Deputy Director for Clinical and Translational Research; and Head, Oxidative Signaling and Molecular Therapeutics Group, National Cancer Institute
NICOLE F. DOWLING, Associate Director for Science, 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; and Director, Center for Personalized Diagnostics and Division of Precision and Computational Diagnostics, University of Pennsylvania
STANTON L. GERSON, Interim Dean and Senior Vice President, Medical Affairs, School of Medicine; Director, Case Comprehensive Cancer Center; Professor, Department of Medicine and Department of Environmental Health Sciences; and Director, National Center for Regenerative Medicine, Case Western Reserve University
JULIE R. GRALOW, Executive Vice President and Chief Medical Officer, American Society of Clinical Oncology
ROY S. HERBST, Ensign Professor of Medicine and Professor of Pharmacology; Director, Center for Thoracic Cancers; Chief of Medical Oncology, Yale Cancer Center and Smilow Cancer Hospital; and Associate Cancer Center Director, Translational Science, Yale School of Medicine
HEDVIG HRICAK, Chair, Department of Radiology, Memorial Sloan Kettering Cancer Center
CHANITA HUGHES-HALBERT, Vice Chair for Research and Professor, Department of Preventive Medicine; and Associate Director for Cancer Equity, Norris Comprehensive Cancer Center, Keck School of Medicine, University of Southern California
MIMI HUIZINGA, Vice President and Head, U.S. Oncology Medical, Novartis Oncology
ROY A. JENSEN, Professor of Pathology and Laboratory Medicine, Anatomy and Cell Biology, and Cancer Biology; Director, University of Kansas Cancer Center; William R. Jewell, MD Distinguished Masonic Professor, University of Kansas Medical Center; and Immediate Past President, Association of American Cancer Institutes
RANDY A. JONES, Professor, School of Nursing, and Assistant Director of Community Outreach Recruitment and Engagement, Emily Couric Cancer Center, University of Virginia
BETH Y. KARLAN, Vice Chair, Women’s Health Research; Professor, Department of Obstetrics and Gynecology, David Geffen School of Medicine; and Director, Cancer Population Genetics, Jonsson Comprehensive Cancer Center, University of California, Los Angeles
SAMIR N. KHLEIF, Director, Jeannie and Tony Loop ImmunoOncology Lab; Biomedical Scholar and Professor of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center; and Member, Society for Immunotherapy of Cancer
MIA LEVY, Chief Medical Officer, Foundation Medicine
SCOTT M. LIPPMAN, Director, Moores Cancer Center; Distinguished Professor of Medicine, Senior Associate Dean, and Associate Vice Chancellor for Cancer Research and Care; and Chugai Pharmaceutical Chair in Cancer, University of California, San Diego
NEAL J. MEROPOL, Vice President of Research Oncology, Flatiron Health; and Adjunct Professor, Case Comprehensive Cancer Center
LARISSA NEKHLYUDOV, Professor of Medicine, Harvard Medical School; Internist, Brigham and Women’s Hospital; and Clinical Director, Internal Medicine for Cancer Survivors, Dana-Farber Cancer Institute
RANDALL A. OYER, Medical Director, Oncology, Ann B. Barshinger Cancer Institute; Medical Director, Cancer Risk Evaluation Program, Penn Medicine Lancaster General Health; and Immediate Past President, Association of Community Cancer Centers
CLEO A. SAMUEL-RYALS, Associate Professor, Department of Health Policy Management, Gillings School of Global Public Health; and Director, Centering Racial Equity in Data Science Initiative, Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill
RICHARD L. SCHILSKY, Principal Investigator, American Society of Clinical Oncology Targeted Agent and Profiling Utilization Registry Study; and Professor Emeritus, University of Chicago
JULIE SCHNEIDER, Associate Director, Research Strategy and Partnership, Oncology Center of Excellence, Food and Drug Administration
SUSAN M. SCHNEIDER, Associate Professor Emerita, School of Nursing, Duke University
LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director for Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
LARA STRAWBRIDGE, Director, Division of Ambulatory Payment Models, Patient Care Models Group, Center for Medicare & Medicaid Innovation, Centers for Medicare & Medicaid Services
GEORGE J. WEINER, C.E. Block Chair of Cancer Research, Professor of Internal Medicine and Pharmaceutical Science; and Director, Holden Comprehensive Cancer Center, University of Iowa
ROBERT A. WINN, Director, Massey Cancer Center; Senior Associate Dean for Cancer Innovation; Professor, Pulmonary Disease and Critical Care Medicine, and Lipman Chair in Oncology, School of Medicine; Virginia Commonwealth University
PHYLICIA L. WOODS, Executive Director, Cancer Policy Institute, Cancer Support Community
National Cancer Policy Forum Staff
FRANCIS AMANKWAH, Program Officer
RACHEL AUSTIN, Senior Program Assistant
LORI BENJAMIN BRENIG, Research Associate
ANNALEE GONZALES, Administrative Assistant
MICAH WINOGRAD, Senior Finance Business Partner
ERIN BALOGH, Co-Director, National Cancer Policy Forum
SHARYL J. NASS, Co-Director, National Cancer Policy Forum, and Senior Director, Board on Health Care Services
This page intentionally left blank.
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:
WENDY DEMARK-WAHNEFRIED, The University of Alabama at Birmingham
CANDACE HENLEY, The Blue Hat Foundation
NANCY KEATING, Harvard Medical School and Brigham and Women’s Hospital
KAREN SEPUCHA, Massachusetts General Hospital and Harvard Medical School
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 MARY S. McCABE, Independent Consultant. She 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.
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, Association of American Cancer Institutes, Association of Community Cancer Centers, Bristol Myers Squibb, Cancer Support Community, CEO Roundtable on Cancer, Flatiron Health, Merck, National Comprehensive Cancer Network, National Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Pfizer Inc., Sanofi, and Society for Immunotherapy of Cancer.
The forum wishes to express its gratitude to the expert speakers whose presentations helped further the dialogue on the array of short- and long-term toxicities and adverse effects that patients may experience as a result of cancer treatment and on considering opportunities to improve quality of life for cancer survivors and their families. The forum also wishes to thank the members of the planning committee for their work in developing an excellent workshop agenda.
This page intentionally left blank.
Contents
THE CHANGING LANDSCAPE OF CANCER CARE AND SURVIVORSHIP
Survivors of Pediatric Cancers
Survivors of Adolescent and Young Adult Cancers
Older Adult Survivors of Cancer
Psychological Effects of Cancer Treatment on Patients and Caregivers
CHALLENGES TO ADDRESSING ADVERSE CONSEQUENCES OF CANCER TREATMENT
Diversity of Patient Experiences Across the Cancer Care Continuum
Boxes and Figures
BOXES
4 Surveillance, Epidemiology, and End Results (SEER) Database and Opportunities for Linkages
5 Kaiser Permanente’s (KP’s) Integrated Health Network Database
6 Southwest Oncology Group (SWOG)–Medicare Database Linkage
FIGURES
1 Second malignancies after Hodgkin’s treatment
3 A model of a learning health care system for oncology care
This page intentionally left blank.
Acronyms and Abbreviations
| ACS | American Cancer Society |
| ASCO | American Society of Clinical Oncology |
| AYA | adolescent and young adult |
| CMMI | Center for Medicare & Medicaid Innovation |
| CMS | Centers for Medicare & Medicaid Services |
| ED | emergency department |
| EHR | electronic health record |
| KP | Kaiser Permanente |
| NCI | National Cancer Institute |
| NCPF | National Cancer Policy Forum |
| OCM | Oncology Care Model |
| PRO | patient-reported outcome |
| SEER | Surveillance, Epidemiology, and End Results |
| SWOG | Southwest Oncology Group |
This page intentionally left blank.
