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 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 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