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
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. 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.
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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.
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
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.
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
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
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
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
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.
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.
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Contents
OVERVIEW OF CANCER SURVIVORSHIP CARE
A Review of the History and Progress in Cancer Survivorship Care
Awareness of the Needs of Cancer Survivors
Clinical Practice Guidelines for Cancer Survivorship Care
Quality Assessment and Models of Care
Educational Opportunities for Health Care Providers
Components of Survivorship Care Delivery
PHYSICAL WELL-BEING IN CANCER SURVIVORSHIP
Research on Interventions for Improved Physical Well-Being
Sleep, Fatigue, and Cognitive Functioning
Posttreatment Cognitive Problems
Translating Research into Practice to Improve Posttreatment Symptoms
Lifestyle Interventions and Physical Health
Research on Weight Loss Interventions
Improving Delivery of Lifestyle Interventions
Prehabilitation and Rehabilitation
Improving Rehabilitation Services Delivery
PSYCHOSOCIAL WELL-BEING AND FAMILY CONSIDERATIONS IN CANCER SURVIVORSHIP
Psychosocial Issues Across the Life Span
State of Knowledge About Caregiving
Lifestyle Support for Caregivers
Challenges to Implementing Psychosocial Interventions
SOCIOECONOMIC CONSIDERATIONS IN CANCER SURVIVORSHIP
Patient Perspectives on Costs of Care and Financial Toxicity
Legal Considerations in Employment and Education
Legal Issues Related to Employment
Legal Issues Related to Education
MODELS OF SURVIVORSHIP CARE DELIVERY
A Patient Perspective on Survivorship Care Delivery
Survivorship Care Delivered by Independent Medical and Nonprofit Organizations
Dissemination and Implementation Science in Cancer Survivorship Care Delivery
Developing a Novel Survivorship Program
POLICY OPTIONS TO IMPROVE CANCER SURVIVORSHIP CARE
Nursing Care Training and Scope of Practice
Fertility Issues in Adolescent and Young Adult Cancer Survivorship
The Role of Advocacy Organizations
Program Accreditation Standards
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Boxes, Figures, and Tables
BOXES
1 Suggestions from Individual Workshop Participants to Improve Cancer Survivorship Care
2 A Patient’s Voice: The Language of Cancer Survivorship
3 A Patient’s Voice: Challenges in Care Coordination
5 A Patient’s Voice: Cancer Rehabilitation
6 A Patient’s Voice: Posttreatment
7 A Caregiver’s Voice: Living with Cancer
8 A Patient’s Voice: Challenges at Work During and After Treatment
9 A Patient’s Voice: The Cost of Care
10 Rural Care Delivery Innovation: Mobile Survivorship Clinic
11 Dissemination and Implementation Key Terms
12 Commission on Cancer Standard 3.3
FIGURES
2 Integrating the survivorship care plan in the Chronic Care Model
3 A conceptual framework of the components of a high-quality cancer care delivery system
4 The phases in translational research
5 Material and psychological financial hardships associated with cancer
6 Elements of the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework
7 A conceptual framework for translating an intervention into practice
8 Survivorship care strategies using risk stratification
TABLES
1 Information Needs Among Cancer Survivors
2 LIVESTRONG Essential Elements of Survivorship Care Delivery, 2011
3 Potential Late Effects After Cancer, by System and Exposure
4 Depression and Anxiety Comorbidities in Cancer Patients
5 Efficacy of Psychological Interventions: Meta-Analyses
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 |
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 |