CHILDHOOD CANCER SURVIVORSHIP

IMPROVING CARE AND QUALITY OF LIFE

National Cancer Policy Board

Maria Hewitt, Susan L. Weiner, and Joseph V. Simone, Editors

INSTITUTE OF MEDICINE

NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
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CHILDHOOD CANCER SURVIVORSHIP IMPROVING CARE AND QUALITY OF LIFE National Cancer Policy Board Maria Hewitt, Susan L. Weiner, and Joseph V. Simone, Editors INSTITUTE OF MEDICINE NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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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; the American Cancer Society; Abbott Laboratories; the American Society of Clinical Oncology; Amgen, Inc.; Aventis; and the United Health Care Foundation. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. Library of Congress Cataloging-in-Publication Data National Cancer Policy Board (U.S.) Childhood cancer survivorship : improving care and quality of life / National Cancer Policy Board ; Susan L. Weiner, Joseph V. Simone, and Maria Hewitt, editors ; Institute of Medicine and National Research Council. p. ; cm. Includes bibliographical references. ISBN 0-309-08898-4 (pbk.) — ISBN 0-309-50581-X (PDF) 1. Tumors in children—Complications. 2. Tumors in children—Patients—Services for. 3. Tumors in children—Government policy—United States. [DNLM: 1. Neoplasms—Child. 2. Survivors. 3. Follow-Up Studies. 4. Health Policy. 5. Needs Assessment. QZ 275 N277c 2003] I. Weiner, Susan Lipschitz, 1942- II. Simone, Joseph V. III. Hewitt, Maria Elizabeth. IV. Title. RC281.C4N367 2003 362.1’9892994—dc21 2003008030 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 Copyright 2003 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. COVER: Candlelighters Childhood Cancer Foundation, National Office; Candlelighters of the El Paso Area Inc., and Sunset Color Graphics, El Paso (photographer).

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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. Bruce M. Alberts 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. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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NATIONAL CANCER POLICY BOARD JOSEPH SIMONE (Chair), Simone Consulting, Dunwoody, GA DIANA PETITTI (Vice Chair), Director, Research & Evaluation, Kaiser Permanente of Southern California, Pasadena, CA BRUCE W. STILLMAN (Vice Chair), Director, Cold Spring Harbor Laboratory, Cold Spring Harbor, NY ELLEN STOVALL (Vice Chair), Executive Director, National Coalition for Cancer Survivorship, Silver Spring, MD JILL BARGONETTI, Associate Professor, Department of Biological Sciences, Hunter College, New York, NY TIM BYERS, Professor of Epidemiology, Program Leader, Clinical Cancer Prevention & Control, University of Colorado Health Sciences Center, Denver, CO VIVIEN W. CHEN, Epidemiology Section Chief & Professor, Louisiana State University Medical Center, New Orleans, LA (member through April 2002) SUSAN CURRY, Professor, Health Policy and Administration, and Director, Health Research and Policy Centers, University of Illinois at Chicago, Chicago, IL (member through April 2002) TIMOTHY EBERLEIN, Bixby Professor and Chairman, Department of Surgery, Washington University School of Medicine, St. Louis, MO KAREN HERSEY, Senior Counsel, Massachusetts Institute of Technology, Cambridge, MA JIMMIE C. HOLLAND, Chair, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY WILLIAM KAELIN, Professor, Harvard Medical School, Boston, MA DANIEL J. KEVLES, Professor, Yale University, New Haven, CT WILLIAM McGUIRE, Chief Executive Officer, United Health Group, Minnetonka, Minnesota JOHN MENDELSOHN, President, M. D. Anderson Cancer Center, University of Texas, Houston, TX KATHLEEN HARDIN MOONEY, Professor, University of Utah College of Nursing, Salt Lake City, UT MONICA MORROW, Professor of Surgery, Comprehensive Breast Program, Northwestern University, Chicago, IL (member through April 2002) NANCY MUELLER, Professor of Epidemiology, Harvard School of Public Health, Department of Epidemiology, Boston, MA PATRICIA NOLAN, Director, Rhode Island Department of Health, Providence, RI

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PILAR OSSORIO, Assistant Professor of Law & Medical Ethics, Associate Director for Programming, Center for the Study of Race and Ethnicity in Medicine, University of Wisconsin Law School, Madison, WI (member through April 2002) CECIL B. PICKETT, Executive Vice President, Discovery Research, Schering-Plough Research Institute, Kenilworth, NJ LOUISE RUSSELL, Professor, Rutgers University, New Brunswick, NJ JOHN SEFFRIN, Chief Executive Officer, American Cancer Society, Atlanta, GA (member through April 2002) THOMAS J. SMITH, Professor, Virginia Commonwealth University, Richmond, VA SANDRA UNDERWOOD, ACS Oncology Nursing Professor, University of Wisconsin School of Nursing, Milwaukee, WI (member through April 2002) SUSAN WEINER, President, The Children’s Cause, Silver Spring, MD ROBERT C. YOUNG, President, American Cancer Society and the Fox Chase Cancer Center, Philadelphia, PA Consultants F. Daniel Armstrong, PhD, University of Miami School of Medicine Alice G. Ettinger, RN, MSN, St. Peter’s University Hospital, New Brunswick, NJ Daniel Green, MD, Roswell Park Cancer Institute, Buffalo, NY Anna T. Meadows, MD, The Children’s Hospital of Philadelphia Raymond Mulhern, PhD, St. Jude Children’s Research Hospital and University of Tennessee College of Medicine Sharon Murphy, MD, Children’s Memorial Hospital, Chicago Kevin Oeffinger, MD University of Texas Southwestern Medical Center at Dallas Leslie Robison, PhD, University of Minnesota Cancer Center Brad Zebrack, PhD, MSW, David Geffen School of Medicine at UCLA, Los Angeles, CA Lonnie Zeltzer, MD, David Geffen School of Medicine at UCLA, Los Angeles, CA Study Staff Maria Hewitt, Study Director Mary Joy Ballantyne, Research Assistant Timothy Brennan, Research Assistant Gelsey Lynn, Research Assistant

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Eric Trabert, Research Associate Jill Shuman, Editor NCPB Staff Roger Herdman, Director, National Cancer Policy Board Anike Johnson, Administrator Rosa Pommier, Financial Associate

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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 National Research Council’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: Robert J. Arceci, The Johns Hopkins University Archie Bleyer, University of Texas Pi-Nian Chang, University of Minnesota Mark Chesler, University of Michigan Maureen Henderson, University of Washington Wendy Hobbie, The Children’s Hospital of Philadelphia John Holohan, Urban Institute Charlie Homer, National Initiative for Child Healthcare Quality Melissa M. Hudson, St Jude Children’s Research Hospital Ernest R. Katz, Children’s Hospital Los Angeles Nancy Keene, Author, “Childhood Cancer Survivors: A Practical Guide to Your Future” Michael P. Link, Stanford University School of Medicine

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William Long, Retired Pediatrician, Gallmann, Mississippi Donald R. Mattison, National Institutes of Health Ann Mertens, University of Minnesota Jeffrey L. Platt, Mayo Clinic Brad H. Pollock, University of Texas Charles A. Sklar, Memorial Sloan-Kettering Cancer Center Gilbert Smith, MAXIMUS, Inc. G. Marie Swanson, University of Arizona Doug Ulman, Lance Armstrong Foundation 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 James M. Perrin, Harvard Medical School, Massachusetts General Hospital for Children, appointed by the Institute of Medicine, and John C. Bailar III, The University of Chicago, appointed by the National Research Council’s Report Review Committee, who 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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Contents     SUMMARY   1 1   INTRODUCTION   15 2   THE EPIDEMIOLOGY OF CHILDHOOD CANCER   20 3   THE TRAJECTORY OF CHILDHOOD CANCER CARE   37 4   LATE EFFECTS OF CHILDHOOD CANCER   49 5   DELIVERING SURVIVORSHIP CARE   90 6   ASSURING APPROPRIATE EDUCATIONAL SUPPORT SERVICES   128 7   EMPLOYMENT, INSURANCE, AND ECONOMIC ISSUES   140 8   RESEARCH ISSUES   166 9   FINDINGS AND RECOMMENDATIONS   188

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List of Boxes, Figures, and Tables BOXES S.1   Functions of an Ideal Follow-Up System for Survivors of Childhood Cancer,   4 3.1   Complementary and Alternative Medicine,   40 5.1   Requirements for Institutional Membership, Children’s Oncology Group,   96 5.2   Characteristics of Selected Programs Serving Adult Survivors,   103 5.3   Services for Children with Cancer and Their Families Offered by Selected Voluntary Organizations,   108 5.4   Recommendations for Preventive Pediatric Health Care (RE9939),   112 5.5   Functions of an Ideal Follow-Up System for Survivors of Childhood Cancer,   118 6.1   Phases of School Reentry for Children with Cancer,   132 7.1   Managed Care Issues of Concern to Children with Special Health Care Needs,   160

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8.1   Past, Current, and Planned Research Activities of COG’s Late Effects Committee,   168 8.2   Current and Proposed CCSS Analyses,   172 8.3   Childhood Survivorship Research Supported by the National Institutes of Health (Extramural Grants),   180 9.1   Critical First Steps to Ensuring Successful Transitioning to Adult-Oriented Health Care,   195 FIGURES 2.1   Distribution of childhood cancers (age 0-19), by ICCC category, 1975-1995,   24 2.2   Five-year relative cancer survival (age 0-19), by period of diagnosis, 1975-1994,   27 2.3   Five-year relative cancer survival rates (age 0-19), 1974-1998,   28 2.4   Age-adjusted cancer incidence and mortality rates (age 0-19), 1975-1999,   28 2.5   Age-adjusted cancer incidence rates (age 0-19), by race and sex, 1995-1999,   29 2.6   Age-adjusted cancer mortality rates (age 0-19), by race and sex, 1995-1999,   30 2.7   Age distribution of incident childhood cancers, SEER, 1975-1995,   30 2.8   Childhood cancer incidence rates, by age, 1991-1995,   31 4.1   All-cause mortality, by sex (Childhood Cancer Survivor Study),   51 4.2   Mortality, by cancer type (Childhood Cancer Survivor Study),   52 4.3   Cumulative cause-specific mortality (Childhood Cancer Survivor Study),   53 5.1   Map of Children’s Oncology Group (COG) member institutions in the United States,   95 5.2   Follow-up of individuals treated in childhood for ALL,   100 5.3   Prevalence of chronic conditions, special needs, and disability among children under age 18,   106 5.4   Neuropsychological testing for long-term survivors of childhood cancer—Pediatric Oncology Group of Ontario,   121 5.5   Comprehensive cancer control plans, 2001,   123 7.1   Number of SSI recipients eligible because of a cancer diagnosis, by age,   155

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8.1   PubMed citations for childhood cancer survivorship research, 1993-2001,   174 8.2   PubMed citations for childhood cancer survivorship research as a percentage of all pediatric cancer-related citations, 1993-2001,   175 8.3   PubMed citations for childhood cancer survivorship research as a percentage of all cancer survivorship-related research, 1993-2001,   176 TABLES 2.1   Number of Deaths and Death Rates for the 10 Leading Causes of Death in Specified Age Groups, United States, 2000,   22 2.2   Cancer Prevalence Estimates, by Current Age, U.S., 1997,   32 2.3   Prevalence of Selected Impairments and Health Conditions Among Children Under Age 18, National Health Interview Survey, United States, 2000,   33 2.4   Cancer Prevalence Estimates for Survivors of Childhood Cancer (Diagnosed at Ages 0 to 19) by Current Age, U.S., 1997,   34 3.1   Treatment Experience of the Childhood Cancer Survivor Study Cohort (n = 20,276),   42 3.2   Chemotherapeutic Agent Use (percent) Among CCSS Participants, by Diagnosis,   44 4.1   Causes of Death in the Childhood Cancer Survivor Study Cohort,   53 4.2   Selected Physical Late Effects Associated with Childhood Cancer,   55 4.3   Enrollment in Special Education Programs Among Survivors of Childhood Acute Lymphoblastic Leukemia Relative to Sibling Controls, by Time from Diagnosis,   60 5.1   Estimates of the Number and Distribution of Cancer-Related Pediatric Ambulatory Care Visits and Hospital Discharges, by Age, Sex, Race/Ethnicity, Payment, and Site of Care, NAMCS and NHAMCS, 1995-1999, HCUP NIS, 1997,   92 5.2   Suggested Evaluation for Suspected Late Effects,   98 5.3   Possible Levels of Follow-Up More Than 5 Years from Completion of Treatment,   119

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7.1   Children with Special Health Care Needs Served in FY 1998 by Each State and the Related Total and Per Child Expenditures Under the Title V Federal-State Block Grants,   158 8.1   Characteristics of the CCSS Participants (n = 14,054),   170 8.2   Special Projects of Regional and National Significance (SPRANS) Grant Funding Levels, Fiscal Year 2000 (in Millions), by Category of SPRANS Grant,   180 8.3   Selected State Projects Supported Through Special Projects of Regional and National Significance (SPRANS) and Community Integrated Service Systems (CISS) Grants,   182

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