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Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

THE NATIONAL ACADEMIES PRESS
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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
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Copyright 2006 by the National Academy of Sciences. All rights reserved.

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Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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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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Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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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.

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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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.

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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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-

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

Institute on Alcohol Abuse and Alcoholism, National Institutes of Health, provided information on the World Health Organization’s International Classification of Functioning, Disability and Health. This classification system was considered by the Committee to describe the late effects of cancer.


Margarette Shelton, M.D. Anderson Cancer, provided information to staff on the role of occupational therapists in cancer survivorship care.


Robert Villanueva, Executive Director of the Maryland State Council on Cancer Control, provided information on the survivorship component of the Maryland Comprehensive Cancer Control Plan.

Many individuals within the IOM provided invaluable guidance and assistance.


Hellen Gelband helped draft the report executive summary.


Roger Herdman through his dedication, effort, and commitment helped move this report from concept to reality in his role as Director of the National Cancer Policy Forum (formerly the National Cancer Policy Board). Dr. Herdman provided assistance throughout the committee process, participating in all meetings, reviewing drafts, and providing guidance to staff as the report progressed.


Linda Martin, Senior Scholar, provided staff with information on disability and health as it relates to survivorship issues.


Michael McGeary, Senior Program Officer, provided information to staff on the Supplemental Security Income and Social Security Disability Insurance programs of the Social Security Administration.


Wilhelmine Miller and Dianne Wolman, Senior Program Officers, reviewed sections of the draft pertaining to health insurance.


Thanks also to Mark Chesnek (Communications Officer), Jennifer Otten (Director, Communications), Jennifer Bitticks (Senior Editorial/Publication Project Manager), Liesl Peters (Report Review Associate), Janice Mehler (Associate Director, Report Review Committee), and the National Academies Press production staff.

This report was made possible by the generous support of the National Cancer Institute, Centers for Disease Control and Prevention, and the American Cancer Society.

Page xiii Cite
Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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4

 

DELIVERING CANCER SURVIVORSHIP CARE

 

187

   

 Optimal Cancer Survivorship Care,

 

188

   

 Barriers to Optimal Cancer Survivorship Care,

 

192

   

 Models for Delivering Survivorship Care,

 

207

   

 The Infrastructure for Delivering Survivorship Care,

 

218

   

 Findings and Recommendations,

 

249

   

Appendix 4A—Summary of Articles Describing Recent U.S. Surveillance Practice Patterns, by Cancer Site,

 

254

   

Appendix 4B—Information on Ambulatory Care Survey Data,

 

288

   

Appendix 4C—What Has Been Learned About Models of Survivorship Care in Other Countries?,

 

289

   

Appendix 4D—Challenges in the Delivery of Selected Survivorship Services,

 

295

5

 

PROVIDERS OF SURVIVORSHIP CARE: THEIR SUPPLY AND EDUCATION AND TRAINING

 

322

   

 Supply of Survivorship Care Providers,

 

322

   

 Status of Professional Education and Training,

 

323

   

 Support for Survivorship Education and Training Programs,

 

349

   

 Findings and Recommendations,

 

352

6

 

EMPLOYMENT, INSURANCE, AND ECONOMIC ISSUES

 

363

   

 Employment,

 

364

   

 Health Insurance,

 

390

   

 Life Insurance,

 

415

   

 Findings and Recommendations,

 

415

   

Appendix 6A—Description of the National Health Interview Survey and the Medical Expenditure Panel Survey and the Methods Used to Derive Estimates of Insurance Coverage and Medical Expenditures Presented in This Chapter,

 

421

7

 

RESEARCH

 

434

   

 Survivorship Research,

 

434

   

 Mechanisms for Conducting Research,

 

438

   

 Challenges of Survivorship Research,

 

451

   

 Status of Survivorship Research,

 

457

   

 Findings and Recommendations,

 

467

 

 

GLOSSARY

 

477

 

 

INDEX

 

485

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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Boxes, Figures, and Tables

Executive Summary

Boxes

1

 

Essential Components of Survivorship Care,

 

3

Chapter 2

Boxes

2-1

 

Who Is a Cancer Survivor?,

 

24

2-2

 

The Cancer Control Continuum,

 

24

2-3

 

Instrumental Activities of Daily Living Items,

 

39

Figures

2-1

 

Estimated number of cancer survivors in the United States from 1971 to 2002,

 

25

2-2

 

Five-year relative survival rates,

 

26

2-3

 

Projected number of cancer cases for 2000 through 2050,

 

27

2-4

 

Cancer prevalence by age, 2002,

 

31

2-5

 

Distribution of cancer survivors in the U.S. by site, 2002,

 

32

2-6

 

Distribution of male cancer survivors in the U.S. by site, 2002,

 

33

2-7

 

Distribution of female cancer survivors in the U.S. by site, 2002,

 

33

2-8

 

Estimated percentage of persons alive in the U.S. diagnosed with cancer by current age, 2002,

 

34

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

2-9

 

Distribution of cancer survivors by year since diagnosis, 2002,

 

35

2-10

 

Age-standardized incidence and death rates, by race and ethnicity, U.S., 1997 to 2001,

 

37

2-11

 

Cancer survival among men, all sites combined, 1988–1994,

 

38

2-12

 

Cancer survival among women, all sites combined, 1988–1994,

 

38

2-13

 

Limitations in ADL/IADL in cancer survivors versus those with no history of cancer,

 

40

2-14

 

Functional limitations in cancer survivors versus those with no history of cancer,

 

41

2-15

 

Number and percentage of chronic conditions among cancer patients, by age group,

 

42

2-16

 

Severity of comorbidity for all patients and each tumor site,

 

43

2-17

 

Conditional 5-year relative survival rates, breast cancer, by stage (modified American Joint Committee on Cancer [AJCC] staging),

 

46

2-18

 

Conditional 5-year relative survival rates, colorectal cancer, by sex and stage (modified AJCC staging),

 

47

2-19

 

Conditional 5-year relative survival rates, Hodgkin’s disease, by sex and age (historical stage),

 

48

2-20

 

Trends in breast cancer incidence, mortality, and survival,

 

49

2-21

 

Percentage distribution of stage at diagnosis of breast cancer, by race and ethnicity, 1996 to 2000,

 

51

2-22

 

Age distribution of incident and prevalent cases of breast cancer,

 

52

2-23

 

Prevalence of selected comorbidities among postmenopausal women with breast cancer, by age,

 

53

2-24

 

Trends in prostate cancer incidence, mortality, and survival,

 

54

2-25

 

Stage at prostate cancer diagnosis, by race and ethnicity, U.S., SEER 1996 to 2000,

 

56

2-26

 

Age distribution of incident and prevalent cases of prostate cancer,

 

57

2-27

 

Stage at colorectal cancer diagnosis, by race and ethnicity, U.S., SEER 1996 to 2000,

 

59

2-28

 

Age distribution of incident and prevalent cases of colorectal cancer,

 

60

2-29

 

Age distribution of incident and prevalent cases of Hodgkin’s disease,

 

61

Page xvii Cite
Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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Tables

2-1

 

Estimated Number of Cancer Survivors, Incident Cases, and Deaths as Well as Age-Adjusted Incidence and Mortality Rates, and 5-Year Relative Survival Rates, United States, 2002,

 

44

2-2

 

Age-Standardized Incidence and Death Rates for Breast Cancer (Female) by Race and Ethnicity, U.S., 1997 to 2001,

 

51

2-3

 

Age-Standardized Incidence and Death Rates for Prostate Cancer by Race and Ethnicity, U.S., 1997 to 2001,

 

55

2-4

 

Age-Standardized Incidence and Death Rates for Colorectal Cancer by Race and Ethnicity, U.S., 1997 to 2001,

 

58

Chapter 3

Boxes

3-1

 

Defining Late- and Long-Term Effects of Cancer Treatment,

 

69

3-2

 

Psychosocial Concerns of Cancer Survivors,

 

70

3-3

 

Advances in Breast Cancer Treatment: Implications for Late Effects,

 

78

3-4

 

Psychosocial Issues Related to Transition Points in Treatment,

 

85

3-5

 

Case Study: Lymphedema,

 

89

3-6

 

Case Study: Osteoporosis,

 

95

3-7

 

Case Study: Aromatase Inhibitors’ Late Effects,

 

97

3-8

 

Case Study: Cardiovascular Late Effects,

 

97

3-9

 

Case Study: Fatigue,

 

99

3-10

 

Approaches to Localized Prostate Cancer Treatment: Implications for Late Effects,

 

114

3-11

 

Approaches to Colorectal Cancer Treatment: Implications for Late Effects,

 

122

3-12

 

Approaches to Hodgkin’s Disease Treatment: Implications for Late Effects,

 

134

3-13

 

NCCN CPG: Follow-up After Completion of Treatment for Hodgkin’s Disease,

 

140

3-14

 

Counseling to Prevent Tobacco Use: Clinical Considerations,

 

143

3-15

 

Nutritional Guidelines for Cancer Survivors from the American Institute for Cancer Research,

 

148

3-16

 

Survivorship Care Plan,

 

152

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Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Page xxii Cite
Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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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

Page xxiii Cite
Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
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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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×

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,

Suggested Citation:"Front Matter." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

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With the risk of more than one in three getting cancer during a lifetime, each of us is likely to experience cancer, or know someone who has survived cancer. Although some cancer survivors recover with a renewed sense of life and purpose, what has often been ignored is the toll taken by cancer and its treatment—on health, functioning, sense of security, and well-being. Long lasting effects of treatment may be apparent shortly after its completion or arise years later. The transition from active treatment to post-treatment care is critical to long-term health.

From Cancer Patient to Cancer Survivor focuses on survivors of adult cancer during the phase of care that follows primary treatment. The book raises awareness of the medical, functional, and psychosocial consequences of cancer and its treatment. It defines quality health care for cancer survivors and identifies strategies to achieve it. The book also recommends improvements in the quality of life of cancer survivors through policies that ensure their access to psychosocial services, fair employment practices, and health insurance.

This book will be of particular interest to cancer patients and their advocates, health care providers and their leadership, health insurers, employers, research sponsors, and the public and their elected representatives.

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