National Academies Press: OpenBook
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.
×
Page R1
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.
×
Page R2
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.
×
Page R3
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.
×
Page R4
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.
×
Page R5
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.
×
Page R6
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.
×
Page R7
Page viii Cite
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.
×
Page R8
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.
×
Page R9
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.
×
Page R10
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.
×
Page R11
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.
×
Page R12
Page xiii Cite
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.
×
Page R13
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.
×
Page R14
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.
×
Page R15
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.
×
Page R16
Page xvii Cite
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.
×
Page R17
Page xviii Cite
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.
×
Page R18
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.
×
Page R19
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.
×
Page R20
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.
×
Page R21
Page xxii Cite
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.
×
Page R22

Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Laura Aiuppa, Maria Hewitt, and Sharyl J. Nass, Rapporteurs National Cancer Policy Forum Board on Health Care Services Health and Medicine Division PREPUBLICATION COPY­ Uncorrected Proofs —

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 Soci- ety of Clinical Oncology, American Society of Hematology, Association of American Cancer Institutes, Bristol-Myers Squibb, Cancer Support Community, CEO Round- table 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-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X 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. PREPUBLICATION COPY­ Uncorrected Proofs —

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental insti- tution to advise the nation on issues related to science and ­echnology. t 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 ­ ciences S 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. PREPUBLICATION COPY­ Uncorrected Proofs —

Consensus Study Reports published by the National Academies of ­ ciences, S 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 partici- pants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National A ­ cademies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY­ Uncorrected Proofs —

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 and 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 rap- porteurs 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 Dis- ease 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. v PREPUBLICATION COPY­ Uncorrected Proofs —

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 vi PREPUBLICATION COPY­ Uncorrected Proofs —

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 ROGER D. DANSEY, Senior Vice President, Clinical Research-Late Stage Development, Merck 1 The National Academies of Sciences, Engineering, and Medicine’s forums and round- tables do not issue, review, or approve individual documents. The responsibility for the pub- lished Proceedings of a Workshop rests with the workshop rapporteurs and the institution. vii PREPUBLICATION COPY­ Uncorrected Proofs —

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 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 viii PREPUBLICATION COPY­ Uncorrected Proofs —

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, North America 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 ix PREPUBLICATION COPY­ Uncorrected Proofs —

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 x PREPUBLICATION COPY­ Uncorrected Proofs —

Reviewers This Proceedings of a Workshop was reviewed in draft form by indi- viduals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical com- ments 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 com- ments 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 xi PREPUBLICATION COPY­ Uncorrected Proofs —

xii REVIEWERS 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. PREPUBLICATION COPY­ Uncorrected Proofs —

Acknowledgments Support from the many annual sponsors of the National Acad- emies 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. Non-federal sponsors include the ­ merican Association for Cancer Research, American Cancer Society, A American College of Radiology, American Society of Clinical Oncol- ogy, 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 improv- ing cancer survivorship care. The Forum also wishes to thank the members ­ of the planning committee for their work in developing an excellent workshop agenda. xiii PREPUBLICATION COPY­ Uncorrected Proofs —

Contents ACRONYMS AND ABBREVIATIONS xxi WORKSHOP OVERVIEW 1 OVERVIEW OF CANCER SURVIVORSHIP CARE 6 The Needs of Cancer Survivors, 9 A Review of the History and Progress in Cancer Survivorship Care, 13 Awareness of the Needs of Cancer Survivors, 13 Survivorship Care Plans, 13 Clinical Practice Guidelines for Cancer Survivorship Care, 16 Quality Assessment and Models of Care, 18 State Cancer Control Plans, 20 Educational Opportunities for Health Care Providers, 21 Employment Challenges, 21 Access to Health Insurance, 22 Survivorship Research, 22 Components of Survivorship Care Delivery, 23 PHYSICAL WELL-BEING IN CANCER SURVIVORSHIP 25 Late- and Long-Term Health Risks, 25 Subsequent Cancers, 27 Cardiovascular Disease, 29 xv PREPUBLICATION COPY­ Uncorrected Proofs —

xvi CONTENTS Accelerated Aging, 30 Research on Interventions for Improved Physical Well-Being, 31 Sleep, Fatigue, and Cognitive Functioning, 32 Posttreatment Fatigue, 33 Posttreatment Sleep Problems, 34 Posttreatment Cognitive Problems, 36 Translating Research into Practice to Improve Posttreatment Symptoms, 38 Lifestyle Interventions and Physical Health, 40 Research on Weight Loss Interventions, 41 Improving Delivery of Lifestyle Interventions, 42 Prehabilitation and Rehabilitation, 43 Improving Rehabilitation Services Delivery, 45 PSYCHOSOCIAL WELL-BEING AND FAMILY CONSIDERATIONS IN CANCER SURVIVORSHIP 46 Psychosocial Issues Across the Life Span, 47 Adult Cancer Survivors, 48 Childhood Cancer Survivors, 50 Family Caregiving Issues, 54 State of Knowledge About Caregiving, 56 Effects of Caregiving, 58 Meeting Caregiver’s Needs, 58 Lifestyle Support for Caregivers, 59 Areas for Research and Policy, 59 Challenges to Implementing Psychosocial Interventions, 60 SOCIOECONOMIC CONSIDERATIONS IN CANCER SURVIVORSHIP 62 Economic Impacts of Cancer, 62 Employment and Insurance, 62 Financial Hardship, 68 Patient Perspectives on Costs of Care and Financial Toxicity, 73 Legal Considerations in Employment and Education, 75 Legal Issues Related to Employment, 76 Legal Issues Related to Education, 77 MODELS OF SURVIVORSHIP CARE DELIVERY 79 Overview of Models of Care, 79 A Patient Perspective on Survivorship Care Delivery, 82 Reaching Rural Cancer Survivors, 83 A Survivorship Clinic in a Community Cancer Center, 84 PREPUBLICATION COPY­ Uncorrected Proofs —

CONTENTS xvii Survivorship Care Delivered by Independent Medical and Nonprofit Organizations, 89 Dissemination and Implementation Science in Cancer Survivorship Care Delivery, 90 Developing a Novel Survivorship Program, 95 POLICY OPTIONS TO IMPROVE CANCER SURVIVORSHIP CARE 96 Federal Policy, 96 Standards for Physician Care, 97 Nursing Care Training and Scope of Practice, 99 Fertility Issues in Adolescent and Young Adult Cancer Survivorship, 101 The Role of Advocacy Organizations, 102 Program Accreditation Standards, 104 The Biden Cancer Initiative, 106 ADVANCING PROGRESS IN CANCER SURVIVORSHIP CARE 107 Risk Stratification, 108 Data Analyses, 108 System Changes, 110 REFERENCES 111 APPENDIX A: STATEMENT OF TASK 131 APPENDIX B: WORKSHOP AGENDA 133 PREPUBLICATION COPY­ Uncorrected Proofs —

Boxes, Figures, and Tables BOXES 1 Suggestions from Individual Workshop Participants to Improve Cancer Survivorship Care, 3 2 A Patient’s Voice: The Language of Cancer Survivorship, 8 3 A Patient’s Voice: Challenges in Care Coordination, 12 4 Recommendations from the 2006 Institute of Medicine Consensus Study Report From Cancer Patient to Cancer Survivor: Lost in Transition, 14 5 A Patient’s Voice: Cancer Rehabilitation, 44 6 A Patient’s Voice: Posttreatment, 47 7 A Caregiver’s Voice: Living with Cancer, 55 8 A Patient’s Voice: Challenges at Work During and After Treatment, 66 9 A Patient’s Voice: The Cost of Care, 75 10 Rural Care Delivery Innovation: Mobile Survivorship Clinic, 86 11 Implementation and Dissemination Key Terms, 92 12 Commission on Cancer Standard 3.3, 105 FIGURES 1 The cancer care trajectory, 7 2 Integrating the survivorship care plan in the Chronic Care Model, 17 xix PREPUBLICATION COPY­ Uncorrected Proofs —

xx BOXES, FIGURES, AND TABLES 3 A conceptual framework of the components of a high-quality cancer care delivery system, 19 4 The phases in translational research, 39 5 Material and psychological financial hardships associated with cancer, 72 6 Elements of the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework, 91 7 A conceptual framework for translating an intervention into practice, 93 8 Survivorship care strategies using risk stratification, 109 TABLES 1 Information Needs Among Cancer Survivors, 10 2 LIVESTRONG Essential Elements of Survivorship Care Delivery, 2011, 24 3 Potential Late Effects After Cancer, by System and Exposure, 26 4 Depression and Anxiety Comorbidities in Cancer Patients, 48 5 Efficacy of Psychological Interventions: Meta-Analyses, 50 6 Risks Affecting Return to Work, 64 7 Financial Hardship Associated with Cancer, 70 PREPUBLICATION COPY­ Uncorrected Proofs —

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 CARE Act Caregiver Advise, Record and Enable Act 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 xxi PREPUBLICATION COPY­ Uncorrected Proofs —

xxii ACRONYMS AND ABBREVIATIONS 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 SPRINT SPeeding Research-tested INTerventions RE-AIM Reach, Effectiveness, Adoption, Implementation, and Maintenance REM rapid eye movement VA Department of Veterans Affairs PREPUBLICATION COPY­ Uncorrected Proofs —

Next: WORKSHOP OVERVIEW »
Long-Term Survivorship Care After Cancer Treatment: Proceedings of a Workshop Get This Book
×
Buy Paperback | $50.00
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

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.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  6. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  7. ×

    View our suggested citation for this chapter.

    « Back Next »
  8. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!