From Cancer Patient to Cancer Survivor

LOST IN TRANSITION

Committee on Cancer Survivorship: Improving Care and Quality of Life

National Cancer Policy Board

Maria Hewitt, Sheldon Greenfield, and Ellen Stovall, Editors

INSTITUTE OF MEDICINE AND NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
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From Cancer Patient to Cancer Survivor: Lost in Transition From Cancer Patient to Cancer Survivor LOST IN TRANSITION Committee on Cancer Survivorship: Improving Care and Quality of Life National Cancer Policy Board Maria Hewitt, Sheldon Greenfield, and Ellen Stovall, Editors INSTITUTE OF MEDICINE AND NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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From Cancer Patient to Cancer Survivor: Lost in Transition THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by the National Cancer Institute, the Centers for Disease Control and Prevention, and the American Cancer Society. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. Library of Congress Cataloging-in-Publication Data From cancer patient to cancer survivor : lost in transition / Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board ; Maria Hewitt, Sheldon Greenfield, and Ellen Stovall, editors. p. ; cm. Includes bibliographical references and index. ISBN 0-309-09595-6 (hardcover) 1. Cancer—Patients—Rehabilitation—United States. 2. Cancer—Patients—Services for—United States. 3. Cancer—Treatment—United States. I. Hewitt, Maria Elizabeth. II. Greenfield, Sheldon. III. Stovall, Ellen. IV. National Cancer Policy Board (U.S.). Committee on Cancer Survivorship: Improving Care and Quality of Life. [DNLM: 1. Neoplasms—psychology—United States. 2. Neoplasms—therapy—United States. 3. Continuity of Patient Care—United States. 4. Quality of Health Care—United States. 5. Survival Rate—United States. 6. Survivors—United States. QZ 266 F931 2005] RC262.F76 2005 362.196′994—dc22 2005024963 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2006 by the National Academy of Sciences. All rights reserved. Printed in the United States of America

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From Cancer Patient to Cancer Survivor: Lost in Transition THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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From Cancer Patient to Cancer Survivor: Lost in Transition COMMITTEE ON CANCER SURVIVORSHIP: IMPROVING CARE AND QUALITY OF LIFE SHELDON GREENFIELD (Chair), Director, Center for Health Policy Research, University of California–Irvine, Irvine, CA ELLEN STOVALL (Vice Chair), President and CEO, National Coalition for Cancer Survivorship, Silver Spring, MD JOHN Z. AYANIAN, Associate Professor of Medicine and Health Care Policy, Harvard Medical School and Brigham and Women’s Hospital, Boston, MA REGINA M. BENJAMIN, Founder and CEO, Bayou La Batre Rural Health Clinic, Inc., Bayou La Batre, AL HARRIS A. BERMAN, Dean of Public Health and Professional Degree Programs and Chair, Department of Public Health and Family Medicine, Tufts University School of Medicine, Boston, MA SARAH S. DONALDSON, Catharine and Howard Avery Professor, Stanford University School of Medicine, Stanford, CA CRAIG EARLE, Assistant Professor, Dana Farber Cancer Institute, Department of Health Policy and Management, Harvard University, Boston, MA BETTY R. FERRELL, Research Scientist, Department of Nursing Research and Education, City of Hope National Medical Center, Duarte, CA PATRICIA A. GANZ, Professor, UCLA Schools of Medicine and Public Health, Director, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center at UCLA, Los Angeles, CA FRANK E. JOHNSON, Professor of Surgery, Saint Louis University Health Sciences Center, St. Louis, MO MARK S. LITWIN, Professor of Health Services and Urology, UCLA School of Medicine, Los Angeles, CA KAREN POLLITZ, Project Director, Georgetown University Health Policy Institute, Washington, DC PAMELA FARLEY SHORT, Professor of Health Policy and Administration, Director of the Center for Health Care and Policy Research, Pennsylvania State University, University Park, PA BONNIE TESCHENDORF, Director, Quality of Life Sciences, American Cancer Society, Atlanta, GA MARY M. VARGO, Associate Professor, Department of Physical Medicine and Rehabilitation, Case Western Reserve University at MetroHealth Medical Center, Cleveland, OH

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From Cancer Patient to Cancer Survivor: Lost in Transition RODGER J. WINN, Clinical Consultant, National Quality Forum, Washington, DC STEVEN H. WOOLF, Professor of Family Practice, Preventive Medicine, and Community Health, Virginia Commonwealth University, Richmond, VA Staff MARIA HEWITT, Study Director ROGER HERDMAN, Director, National Cancer Policy Board ELIZABETH J. BROWN, Research Associate JAEHEE YI, Intern ANIKE JOHNSON, Administrative Assistant

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From Cancer Patient to Cancer Survivor: Lost in Transition Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the NRC’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Diane Blum, CancerCare, Inc. Cathy Bradley, Virginia Commonwealth University Murray F. Brennan, Weill Medical College of Cornell University Robert S. Galvin, General Electric Eva Grunfeld, Cancer Care Nova Scotia Sandra Horning, Stanford Cancer Center Jon Kingsdale, Tufts Health Plan Susan Leigh, Cancer Survivorship Consultant Kevin Oeffinger, Memorial Sloan-Kettering Cancer Center Barbara Schwerin, Cancer Legal Resource Center Phyllis Torda, National Committee for Quality Assurance LuAnn Wilkerson, David Geffen School of Medicine at UCLA

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From Cancer Patient to Cancer Survivor: Lost in Transition Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Joseph P. Newhouse, Harvard Medical School and Kennedy School of Government; and Melvin Worth, Scholar-in-Residence, Institute of Medicine. Appointed by the National Research Council and the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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From Cancer Patient to Cancer Survivor: Lost in Transition Acknowledgments The committee was aided in its deliberations by the researchers, administrators, and health professionals who presented informative talks to the committee and participated in lively discussions at the open meetings, including: Karen Antman, Deputy Director for Translational and Clinical Sciences, National Cancer Institute (NCI), who set the stage for the committee’s first meeting by providing an overview, “The U.S. National Cancer Program from 60,000 Feet.” Noreen M. Aziz, Program Director, Office of Cancer Survivorship (OCS), NCI, reviewed for the committee at their first meeting the characteristics of U.S. cancer survivors and provided information about the OCS and its research portfolio and other survivorship activities within the NIH. Peter Bach, Senior Adviser, Office of the Administrator, Centers for Medicare and Medicaid Services (CMS), at the committee’s third meeting provided an overview of cancer-related activities at CMS with a particular focus on demonstration programs in the areas of quality of care, cancer navigation, and coordination of care. Kevin Brady, Acting Director, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention (CDC), at the committee’s first meeting presented information on the public health implications of cancer survivorship, including the role of comprehensive cancer control planning.

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From Cancer Patient to Cancer Survivor: Lost in Transition He also described the effort co-sponsored by the CDC and the Lance Armstrong Foundation which resulted in the 2004 publication, A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Mark Clanton, Deputy Director, NCI, Office of Cancer Care Delivery Systems, addressed the committee at their third meeting and discussed survivorship-related strategic planning, priority setting, and implementation, and in addition, issues related to quality of cancer care. Robert Hiatt, Director of Population Science and Deputy Director of the University of California, San Francisco Comprehensive Cancer Center, at the committee’s second meeting, described progress on two initiatives related to information technology and data systems, that of C-Change and the National Committee for Quality Assurance (NCQA). Margaret Kripke, member of the President’s Cancer Panel (PCP), at the committee’s first meeting reviewed recommendations of the PCP’s 2004 report, Living Beyond Cancer: Finding a New Balance, and showed the Panel’s video that was based on testimony presented at the PCP’s public hearings. Julia Rowland, Director, NCI’s Office of Cancer Survivorship, at the committee’s third meeting provided an update and overview of the federal research portfolio on cancer survivorship and discussed research opportunities (and challenges) in survivorship and examples of NCI-sponsored initiatives that are underway. Jerome Yates, National Vice President for Research, American Cancer Society (ACS), at the committee’s first meeting provided information about the ACS’s survivorship research programs and, in particular, two large survivorship studies being conducted within the ACS’s Behavioral Research Center. The publishers of Seminars in Oncology generously agreed to provide to the committee copies of two of their issues focused on survivorship, “Post-treatment Surveillance for Potentially Curable Malignancies” (June 2003), and “Late Effects of Treatment and Survivorship Issues in Early-Stage Breast Carcinoma” (December 2003). The committee also wishes to acknowledge with appreciation the assistance of many individuals committed to improving the lives of cancer survivors. Wendy Demark-Wahnefried, Program of Cancer Prevention, Detection & Control Research, Duke Comprehensive Cancer Center, provided assis-

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From Cancer Patient to Cancer Survivor: Lost in Transition tance in drafting the section of the report on lifestyle following cancer treatment. Eric Feuer, Chief of NCI’s Statistical Research and Applications Branch, Surveillance Research Program, provided the committee with estimates of conditional survival (these are included in chapter 2 of the report). Ann M. Flores, Assistant Professor, Department of Obstetrics and Gynecology, Meharry Medical College School of Medicine, provided background information to staff about physical therapy and cancer rehabilitation. Marshall Fritz, Statistician, Health Resources and Services Administration, provided special tabulations of the 2000 National Sample Survey of Registered Nurses and assisted staff in their understanding the oncology nursing workforce. Barbara Hoffman, Rutgers University, provided a background paper to the National Cancer Policy Board on legal issues confronting cancer survivors and contributed to the chapter on employment, insurance, and financial issues. Jimmie Holland, Chair, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, discussed with staff issues related to psychosocial distress in the context of cancer survivorship Linda Jacobs, Living Well After Cancer at the University of Pennsylvania, Joan Armstrong, Breast Wellness Clinic at the University of Michigan, and Rena Sellin, Life After Cancer Care, M.D. Anderson Cancer Center, provided information to staff pertaining to their cancer survivorship clinics. Susan Leigh, Cancer Survivorship Consultant, and Pamela J. Haylock, Oncology Consultant, helped staff and the committee understand the important roles of nurses in cancer survivorship care. Mary McCabe and Jennifer Ford, Memorial Sloan-Kettering Cancer Center, provided information on new survivorship care initiatives at Sloan-Kettering. Cindy Pfalzer, University of Michigan-Flint, discussed the role of physical therapists in cancer survivorship care with staff. Paul J. Placek, Senior Statistician, Office of the Center Director, National Center for Health Statistics, Centers for Disease Control and Prevention (retired), and John F. Hough, Health Scientist Administrator, National

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From Cancer Patient to Cancer Survivor: Lost in Transition Figures 3-1   Quality of life: conceptual model,   68 3-2   Breast cancer survivors compared to healthy controls,   86 3-3   Estimated probability of amenorrhea among breast cancer survivors, by age at diagnosis and treatment modality,   91 3-4   NCCN practice guideline on cancer-related fatigue,   100 Tables 3-1   Examples of Possible Late Effects of Radiation Therapy, Chemotherapy, and Hormonal Therapy Among Survivors of Adult Cancers,   72 3-2   Examples of Possible Late Effects of Surgery Among Survivors of Adult Cancers,   74 3-3   Possible Late Effects Among Breast Cancer Survivors,   82 3-4   Breast Cancer Clinical Practice Guidelines,   104 3-5   Examples of Breast Cancer CPG Recommendations on Follow-up Mammography,   112 3-6   Examples of Breast Cancer CPG Recommendations on Menopausal Symptom Management,   113 3-7   Possible Late Effects Among Prostate Cancer Survivors,   116 3-8   Possible Late Effects Among Colorectal Cancer Survivors,   124 3-9   Examples of Colorectal Cancer CPG Recommendations on Follow-up Colonoscopy,   126 3-10   Colorectal Cancer Clinical Practice Guidelines,   130 3-11   Possible Late Effects Among Survivors of Hodgkin’s Disease,   136 3-12   Prevalence of Smoking by Self-Reported History of Cancer, by Age, United States, 1999-2000,   142 Chapter 4 Boxes 4-1   Recommendation from the Institute of Medicine Committee on Health Care Quality in America,   191 4-2   Potential Survivorship Quality of Care Measures,   203 4-3   Selected Survivorship-Related Standards of the American College of Surgeons’ Commission on Cancer,   226 4-4   Guidelines for Rehabilitation and for Patient Advocacy and Survivorship: Association of Community Cancer Centers Standards for Cancer Programs,   230 4-5   American Cancer Society Survivorship-Related Books,   240

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From Cancer Patient to Cancer Survivor: Lost in Transition 4-6   Examples of Information on Survivorship Available to Cancer Survivors and Their Families,   243 4-7   A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies,   246 4-8   Comprehensive Cancer Control and Survivorship in Maryland,   248 4-9   Recommendation from Ensuring Quality Cancer Care,   250 4C-1   Components of Shared-Care Program Tested in a Clinical Trial,   290 4D-1   Congressional Actions Affecting Cancer Rehabilitation,   299 4D-2   Providers of Cancer Rehabilitation Services,   301 4D-3   Medicare Coverage of Outpatient Therapy Services,   303 Figures 4-1   Cancer care trajectory,   190 4-2   Average number of months of phase of care in 1996 among patients diagnosed with colorectal cancer from 1975 to 1996, by years since diagnosis,   223 4-3   NCI-designated cancer centers,   224 4-4   Status of CDC State Comprehensive Cancer Control Plans,   245 Tables 4-1   The Provision of Counseling During Adult Cancer-Related Ambulatory Care Visits, United States, 2001–2002,   199 4-2   Distribution of Adult Ambulatory Cancer Care Visits, by Site of Visit, Physician Specialty, and Clinic Type, United States, 2001–2002,   209 4-3   Proportion of Adult Cancer-Related Ambulatory Care Visits for Which Care Was Shared by Other Physicians, by Site of Care, United States, 2001–2002,   210 4-4   Percentage of Adult Cancer-Related Ambulatory Care Visits During Which Patients Saw an RN, PA, or NP, by Site of Care, United States, 2001–2002,   213 4-5   Adult Cancer Survivorship Clinics,   214 4-6   Characteristics of Cancer-Related Hospital Discharges, United States, 2002,   220 4-7   Patient’s Race/Ethnicity and Payment Source for Adult Cancer-Related Ambulatory Care Visits, by Site of Care, United States, 2001–2002,   221 4-8   Survivorship Services in NCI-Designated Comprehensive Cancer Centers,   224

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From Cancer Patient to Cancer Survivor: Lost in Transition 4-9   Number (and Percentage) of Programs Approved by the American College of Surgeons’ Commission on Cancer That Provide Support Services, 2004,   227 4-10   Survivorship Services in Selected ACCC Cancer Centers,   232 4-11   Selected National Community-Based Psychosocial Resources,   234 4D-1   Physicians’ Qualifications to Provide Genetic Counseling and Recommend Genetic Testing,   296 Chapter 5 Boxes 5-1   Essential Content of Survivorship Training for Health Care Providers,   327 5-2   Cancer as a Chronic Disease: Curriculum for Survivorship Required Objectives for Medical School Core Curriculum,   329 5-3   Continuing Medical Education: Examples from Recent Professional Meetings,   332 5-4   Selected Examples of Survivorship-Related PDQ Summaries on Supportive Care (Coping with Cancer),   335 5-5   Oncology Social Work: Scope of Practice,   343 5-6   The American Psychosocial Oncology Society Online Education Program: Survivorship,   347 5-7   Examples of National Institutes of Health Program Education Grants Related to Cancer Survivorship,   350 Tables 5-1   Estimates of the Supply of Selected Physicians Who Provide Survivorship Care,   324 5-2   Estimates of the Supply of Selected Nonphysician Survivorship-Related Providers,   326 5-3   Selected ACS Professional Education and Training Programs,   351 5-4   Professional Education Programs Supported by the Lance Armstrong Foundation,   352 5-5   Methods of Survivorship Continuing Education,   353 Chapter 6 Boxes 6-1   Examples of Cancer-Related Job Loss,   365 6-2   The Americans with Disabilities Act (ADA),   374 6-3   Examples of Accommodations of Individuals with Cancer,   376 6-4   Family and Medical Leave Act (FMLA) Benefits,   379

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From Cancer Patient to Cancer Survivor: Lost in Transition 6-5   Examples of State Initiatives on Leave Policies Benefiting Cancer Survivors,   381 6-6   10 Tips for Employers,   383 6-7   Examples of Programs Providing Legal Assistance to Cancer Survivors,   385 6-8   Teleconferences Addressing Workplace Issues Sponsored by CancerCare,   386 6-9   Principles to Guide the Extension of Coverage,   392 6-10   Barriers Faced by the Uninsured in Obtaining Private Individual Insurance—“The Three A’s,”   400 6-11   Limitations of State High-Risk Pools,   401 6-12   Limitations of Individual Market Protections Under the Health Insurance Portability and Accountability Act,   404 Figures 6-1   Work limitations by age and self-reported history of cancer, 1998–2000,   370 6-2   Number of SSI recipients eligible because of a cancer diagnosis, by age, December 2003,   389 6-3   National U.S. Medicare expenditures in 1996 by cancer type and phase of care,   391 6-4   Sources of payment for health services expenditures among people reporting cancer-related health effects, by age, 2001–2002,   405 6-5   Average annual out-of-pocket expenditures among people reporting cancer-related health effects, by age, 2001–2002,   406 Tables 6-1   Limitations Imposed by Cancer and Its Treatment on Patients Currently Working,   368 6-2   Resolution of Cancer-Related ADA Charges, FY 2000–2003,   378 6-3   Percentage of Workers with Access to Disability Insurance Benefits, by Selected Characteristics, Private Industry, 2004,   388 6-4   People Without Health Insurance Coverage by Age, United States, 2004,   393 6-5   Health Insurance Status of Cancer Survivors Aged 25 to 64, by Selected Characteristics, 2000–2003,   396 6-6   Annual Costs for Cancer Drugs Commonly Administered to Cancer Survivors,   410 6-7   Percentage of Workers with Access to Life Insurance Benefits, by Selected Characteristics, Private Industry, 2003,   416 6A-1   NHIS Sample Size and Response Rates, 2000–2003,   422

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From Cancer Patient to Cancer Survivor: Lost in Transition Chapter 7 Boxes 7-1   Selected Recent Publications from Research Conducted Using the CaPSURE Database,   443 7-2   Selected Recent Publications from Research Conducted Using the Childhood Cancer Survivor Study,   445 7-3   Selected Survivorship Research Based on SEER-Medicare Data,   448 7-4   HIPAA’s Privacy Rule,   456 7-5   Examples of National Institutes of Health (NIH) Program Funding Opportunities Related to Cancer Survivorship,   462 7-6   Active American Cancer Society Cancer Survivorship Grants (Adults),   466 Figures 7-1   PubMed citations for adult cancer survivorship research, 1992–2004,   437 7-2   PubMed citations for adult cancer treatment research, 1992–2004,   437 7-3   NIH cancer survivorship grant support ($ millions), by year,   460 7-4   Number of cancer survivorship grants awarded by NIH, by year,   460 Tables 7-1   Domains of Cancer Survivorship Research,   435 7-2   Examples of Clinical Trials of Relevance to Survivors of Adult Cancers,   440 7-3   Cancer Clinical Trials,   442

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From Cancer Patient to Cancer Survivor: Lost in Transition Preface A rather startling statistic opened the eyes of many on our committee when they were invited to undertake a study for the Institute of Medicine (IOM) on cancer survivorship. The eye-opening statistic describes a burgeoning population of cancer survivors who live among us today and who are more than 10 million strong. Cancer survivors swell the ranks of the many places where we live, work, and play, yet, as our committee concluded, they remain largely understudied and lost to follow-up by our scientific research and health services delivery communities, respectively. Although the concept of survivorship is not new, we have determined there are times when trends in medical science, health services research, and public health awareness converge to forge a new realization. Such may be happening with respect to survivorship research and cancer care with the publication of this report. These three trends forecast how we believe the findings and recommendations of this report can have an impact on our health care delivery system for the majority of cancer survivors who suffer the long-term and late effects of their diagnosis and treatment for cancer. First, for many, cancer has become a chronic condition as a new generation of cancer survivors is living longer following improved access to effective screening, diagnosis, and treatments. Second, strides have been made in the science of health services research with models of care emerging for individuals with chronic conditions needing complex care. Third, a persistent and energetic consumer movement has demanded patient-centered quality of care across the entire cancer trajectory. These trends dovetail nicely with the extensive review of peer-reviewed

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From Cancer Patient to Cancer Survivor: Lost in Transition literature that was considered by the IOM Committee on Cancer Survivorship. The report by this committee builds on the large body of IOM’s work to improve Americans’ access to quality health care. By also reviewing reports that summarize the anecdotal and compelling stories of survivorship, we heard the voices of survivors who underwent a life-changing experience—learning that large numbers of them are dealing with a legacy of physical, psychological, social, vocational, spiritual, and economic consequences. Hearing about their experiences further opened our eyes to the unspoken and hidden disabilities that follow successful treatment for cancer. The committee was composed of 17 members representing many disciplines with broad knowledge and expertise. Several committee members had a personal diagnosis of cancer, and others would be considered cancer survivors because they include the family, friends, and loved ones of individuals diagnosed with cancer. Both of us have very personal reasons for wanting this report to find its voice with policy makers and all those who share responsibility for our health care financing and delivery systems. For one of us (Ellen Stovall), who is a 33-year survivor of two diagnoses of cancer, it represents a huge step in a dream come true for her and the founders of the National Coalition for Cancer Survivorship (NCCS): the recognition of cancer survivorship as a topic unto itself. Ellen currently leads NCCS, which began its efforts in the mid-1980s with few listening. For the other of us (Shelly Greenfield), it represents a rare victory, an endorsement of the recognition that the efforts of doctors alone, no matter how hard they are trying, are going to fall short if systemic issues such as care coordination, patient-centered care delivery, financing, informatics, and accountability for quality of care are not enjoined. For all of us who have ever been diagnosed with cancer, for all of us who know someone with cancer, for all of us who have lost someone to cancer, for all of us who will be diagnosed with cancer in our lifetime, and the millions who will survive this diagnosis, we hope this report will forge a new era of cancer survivorship by raising awareness of the many concerns facing cancer survivors. Most importantly, we want to persuade the policy makers named in our recommendations of the imperative to assume the large tasks ahead and ultimately to improve the care and quality of life of individuals with a history of cancer. On behalf of our committee, we want to extend our gratitude to the Institute of Medicine for giving us superb staff to guide our discussions and push us toward prioritizing what at times seemed to be an endless list of important issues on which to focus. With appreciation to all involved with this report, we are deeply indebted to Roger Herdman, Director, National Cancer Policy Board for his leadership. Maria Hewitt’s organizational skills,

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From Cancer Patient to Cancer Survivor: Lost in Transition her vast background in cancer activities, her rare ability to handle highly opinionated experts from diverse fields, and her wide perspective blending both the professional and public aspects of this complex topic made this report happen. We also thank Elizabeth Brown for the flawless management of the project. The dedication of both the committee and staff to excellence in research has made this report a document that will guide critical work in health care for cancer survivors for many years to come. Shelly Greenfield, Chair Ellen Stovall, Vice Chair

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From Cancer Patient to Cancer Survivor: Lost in Transition From Cancer Patient to Cancer Survivor

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