From Cancer Patient to Cancer Survivor LOST IN TRANSITION

AN AMERICAN SOCIETY OF CLINICAL ONCOLOGY AND INSTITUTE OF MEDICINE SYMPOSIUM

Maria Hewitt and Patricia A. Ganz Editors

INSTITUTE OF MEDICINE AND NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington, D.C.
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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium From Cancer Patient to Cancer Survivor LOST IN TRANSITION AN AMERICAN SOCIETY OF CLINICAL ONCOLOGY AND INSTITUTE OF MEDICINE SYMPOSIUM Maria Hewitt and Patricia A. Ganz 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: An American Society of Clinical Oncology and Institute of Medicine Symposium 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 Contract No. N02-CO-01029 between the National Academy of Sciences 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 0-309-10123-9 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. 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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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium “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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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium 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: An American Society of Clinical Oncology and Institute of Medicine Symposium Contents     ABSTRACT   1 1   INTRODUCTION   3 2   PLENARY SESSION   7 3   MORNING BREAKOUT SESSIONS WITH INVITED SPEAKERS   56      Implementing the Cancer Survivorship Care Plan and Coordinating Care,   56      Building Bridges Between Oncology and Primary Care Providers,   76 4   LUNCHEON ADDRESS   94 5   AFTERNOON BREAKOUT SESSIONS WITH INVITED SPEAKERS   97      Developing and Testing Models of Survivorship Care,   97      Developing Guidelines, Instituting Quality Improvement, and Strengthening Professional Education Programs,   118      Making Better Use of Psychosocial and Community Support Services; Addressing Employment and Insurance Issues,   135      Investing in Survivorship Research,   149

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium 6   REPORTS FROM BREAKOUT SESSIONS   168     REFERENCES   179     APPENDICES     A   SYMPOSIUM AGENDA   183 B   AMERICAN SOCIETY OF CLINICAL ONCOLOGY PRESS RELEASE   186