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Implementing Cancer Survivorship Care Planning: Workshop Summary
Implementing Cancer Survivorship Care Planning
Workshop Summary
A National Coalition for Cancer Survivorship and Institute of Medicine National Cancer Policy Forum Workshop
In Partnership with
The Lance Armstrong Foundation and The National Cancer Institute
Maria Hewitt and Patricia A. Ganz, Rapporteurs
INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES
THE NATIONAL ACADEMIES PRESS
Washington, D.C.
www.nap.edu
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Implementing Cancer Survivorship Care Planning: Workshop Summary
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 Coalition for Cancer Survivorship, in partnership with the Lance Armstrong Foundation and the National Cancer Institute. 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.
International Standard Book Number-10: 0-309-10318-5
International Standard Book Number-13: 978-0-309-10318-3
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 2007 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America.
The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.
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Implementing Cancer Survivorship Care Planning: Workshop Summary
“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
—Goethe
INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES
Advising the Nation. Improving Health.
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Implementing Cancer Survivorship Care Planning: Workshop Summary
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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Implementing Cancer Survivorship Care Planning: Workshop Summary
NATIONAL CANCER POLICY FORUM
HAROLD L. MOSES (Chair), Professor of Cancer Biology,
Medicine, and Pathology,
Director Emeritus,
Vanderbilt-Ingram Comprehensive Cancer Center, Vanderbilt University Medical Center
PETER BACH, Senior Advisor,
Office of the Administrator, Centers for Medicare & Medicaid Services
EDWARD J. BENZ, Jr, President,
Dana-Farber Cancer Center
THOMAS G. BURISH, Chair,
ACS Board and Provost, Notre Dame University
MARK CLANTON, Deputy Director,
Cancer Delivery Systems, National Cancer Institute
BETTY R. FERRELL, Research Scientist,
City of Hope National Medical Center
JOSEPH F. FRAUMENI, Jr, Director,
Division of Cancer Epidemiology and Genetics, National Cancer Institute
STEPHEN H. FRIEND, Executive Vice President,
Oncology, Merck
PATRICIA A. GANZ, American Society of Clinical Oncology Board Member and Professor of Medicine,
University of California at Los Angeles
THOMAS J. KEAN, Executive Director,
C-Change
WILLIAM LAWRENCE, Director,
Center for Outcomes and Evidence, Agency for Healthcare Research and Quality
LYNN M. MATRISIAN, Chair,
Division of Cancer Biology, Vanderbilt University
DAVID R. PARKINSON, Senior Vice President,
Oncology Research and Development, Biogen Idec
EDITH PEREZ, Director,
Cancer Clinical Study Unit, Mayo Clinic
SCOTT RAMSEY, Full Member,
Fred Hutchinson Cancer Research Center
EDDIE REED, Director,
Division of Cancer Prevention and Control, Centers for Disease Control and Prevention
WILLIAM A. ROBINSON, Director,
Office of Minority Health and Health Disparities, Health Resources and Services Administration, Department of Health and Human Services
CHARLES SAWYERS, Chairman,
Human Oncology and Pathogenesis Program, Memorial Sloan-Kettering Cancer Center
MARGARET R. SPITZ, Chair of Epidemiology,
M.D. Anderson Cancer Center
ELLEN STOVALL, President and CEO,
National Coalition for Cancer Survivorship
JANET WOODCOCK, Deputy Commissioner for Operations,
Food and Drug Administration
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Implementing Cancer Survivorship Care Planning: Workshop Summary
Staff
MARIA HEWITT, Study Director
ROGER HERDMAN, Director,
ALIZA NORWOOD, Research Assistant
MARY ANN PRYOR, Senior Program Assistant
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Implementing Cancer Survivorship Care Planning: Workshop Summary
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:
Betty R. Ferrell, PhD, RN, FAAN, City of Hope National Medical Center
Len Lichtenfeld, MD, FACP, American Cancer Society
Kevin Oeffinger, MD, Memorial Sloan-Kettering Cancer Center
Jerome W. Yates, MD, MPH, American Cancer Society
Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the final draft of the report before its release. The review of this report was overseen by Melvin Worth, MD, Scholar-in-Residence at the Institute of Medicine. Appointed by the National Research Council and Institute of Medicine, he was 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 rapporteurs and the institution.
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Implementing Cancer Survivorship Care Planning: Workshop Summary
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Implementing Cancer Survivorship Care Planning: Workshop Summary
Contents
ABSTRACT
1
1
INTRODUCTION
3
2
SURVIVORSHIP CARE PLANNING
5
Implementing the Survivorship Care Plan,
5
The Status of Treatment Summaries for Oncology Care,
16
Discussion,
24
3
PERSPECTIVES ON SURVIVORSHIP CARE PLANNING
31
Introduction,
31
Perspectives of Cancer Survivors,
32
Perspectives of Nurses,
36
Perspectives of Primary Care Physicians and Oncologists,
42
Discussion,
49
Small Group Discussion,
54
4
RESOURCES FOR COMPLETING THE CARE PLAN
64
Introduction,
64
Survivorship Guidelines,
64
ASCO Initiative,
72
Psychosocial Support Resources,
76
Recommendations for Healthy Lifestyle Behaviors,
81
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Implementing Cancer Survivorship Care Planning: Workshop Summary
Physician and Survivor Decision Support Using Information Technology: The Passport for Care,
91
Reaction,
94
Regional Approaches to Cancer Survivorship Planning,
100
5
PILOT TESTS AND ASSESSMENT OF THEIR IMPACT
107
Introduction,
107
LIVESTRONG™ Survivorship Center of Excellence Network,
107
Quality Oncology Practice Initiative,
112
The HMO Cancer Research Network,
114
The Centers for Medicare and Medicaid Service’s 2006 Oncology Demonstration Program,
117
An Evaluation and Research Agenda,
124
6
WRAP-UP SESSION
129
APPENDIXES
A Workshop Agenda
133
B Participant Names and Affiliations
136
C Excerpt: From Cancer Patient to Cancer Survivor: Lost in Transition
139
D Commissioned Background Papers
143
D.1 The Cancer Treatment Plan and Summary: Re-Engineering the Culture of Documentation to Facilitate High Quality Cancer Care
145
D.2 Recommendations for Healthy Behavior and Wellness Following Primary Treatment for Cancer
166
D.3 The Passport for Care, Improving the Lives of Childhood Cancer Survivors: Development of a Novel Internet Resource for Managing Long-Term Health Risks
206
D.4 Regional Approaches to Cancer Survivorship Care Planning
242
D.5 Cancer Survivorship Care Planning: An Evaluation and Research Agenda
257
E Template for “Cancer Survivorship Care Plan” Tested in IOM Focus Groups and Interviews
276
F Treatment Summary Forms Developed by the Children’s Oncology Group (COG)
288
G Memorial Sloan-Kettering Cancer Center Treatment Summary and Follow-Up Plan
307
