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Ensuring Quality Cancer Care
Maria Hewitt and Joseph V. Simone, Editors
National Cancer Policy Board
Institute of Medicine and Commission on Life Sciences,
National Research Council
NATIONAL ACADEMY PRESS
Washington, D.C.
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NATIONAL ACADEMY PRESS
2101 Constitution Avenue, N.W. Washington, D.C. 20418
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 National Cancer Policy Board, which is responsible for the report, were chosen for their special competences and with regard for appropriate balance.
The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy’s 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine 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. William A. Wulf are chairman and vice chairman, respectively, of the National Research Council.
This study was supported through funding provided by the National Cancer Institute (Contract No. NO2-CO-71024); the Centers for Disease Control and Prevention; the American Cancer Society; Amgen, Inc.; Abbott Laboratories; and Hoechst Marion Roussel, Inc. The views presented in this report are those of the National Cancer Policy Board and are not necessarily those of the funding organizations.
The full text of this report is available on line at www.nationalacademies.org/publications/
For more information about the Institute of Medicine and the National Cancer Policy Board, visit www4.nationalacademies.org/iom/iomhome.nsf
Library of Congress Cataloging-in-Publication Data
Ensuring quality cancer care / Maria Hewitt and Joseph V. Simone, editors ; National Cancer Policy Board, Institute of Medicine and Commission on Life Sciences, National Research Council.
p. cm.
Includes bibliographical references and index.
ISBN 0-309-06480-5 (pbk.)
1. Cancer—Treatment—United States. 2. Cancer—Treatment—Quality control. 3. Cancer—Patients—Care—United States. I. Hewitt, Maria Elizabeth. II. Simone, Joseph V. III. National Cancer Policy Board (U.S.)
RA645.C3 E57 1999
362.1'96994'00973—dc21
99-6488
CIP
Cover: Constellation Cancer, the Crab. “Cancer” comes from the Latin word meaning “crab, malignant tumor.”
Copyright 1999 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
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NATIONAL CANCER POLICY BOARD
PETER HOWLEY (Chair), George Fabyan Professor and Chairman,
Department of Pathology, Harvard Medical School
JOSEPH SIMONE (Vice Chair), Medical Director,
Huntsman Cancer Foundation and Institute, University of Utah
JOHN BAILAR, Chairman,
Department of Health Studies, University of Chicago
NORMAN DANIELS, Professor of Philosophy,
Tufts University
JOSEPH DAVIE, Vice President of Research,
Biogen, Inc., Cambridge, Massachusetts
ROBERT DAY, Emeritus President and Director, and Member,
Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, Washington.
KATHLEEN FOLEY, Chief,
Pain Service, Department of Neurology, Memorial Sloan-Kettering Cancer Center, New York City
BERTIE FORD, Manager,
Oncology Research and Registry, Grant/Riverside Hospital, Columbus, Ohio
ELLEN GRITZ, Professor and Chair,
Department of Behavioral Sciences, M.D. Anderson Cancer Center, Houston, Texas
ELIZABETH HART, President and Chief Executive Officer,
Hart International, Dallas, Texas
THOMAS KELLY, Boury Professor and Chairman,
Department of Molecular Biology and Genetics, Johns Hopkins University School of Medicine
JOHN LASZLO,
Atlanta, Georgia
WILLIAM McGUIRE, Chief Executive Officer,
United HealthCare Corporation, Minnetonka, Minnesota
DIANA PETITTI, Director,
Research and Evaluation, Kaiser Permanente of Southern California, Pasadena
AMELIE RAMIREZ, Associate Professor,
Department of Medicine, Baylor College of Medicine
JOHN SEFFRIN, Chief Executive Officer,
American Cancer Society, Atlanta, Georgia
JANE E. SISK, Professor,
Division of Health Policy and Management, Joseph L. Mailman School of Public Health, Columbia University, New York City
ELLEN STOVALL, Executive Director,
National Coalition for Cancer Survivorship, Silver Spring, Maryland
FRANCES VISCO, President,
National Breast Cancer Coalition, Washington, D.C.
ROBERT YOUNG, President,
Fox Chase Cancer Center, Philadelphia
STAFF
MARIA HEWITT, Study Director,
ROBERT COOK-DEEGAN, Director,
National Cancer Policy Board
HELLEN GELBAND, Senior Program Officer
ELLEN JOHNSON, Administrative Assistant
ANNIKA OLSSON, Research Assistant
ELIZABETH KIDD, Intern
AMANDA GREENE, Intern
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CONSULTANTS
BRUCE E. HILLNER,
Medical College of Virginia Campus, Virginia Commonwealth University
JEANNE S. MANDELBLATT,
Georgetown University Medical Center
MARK A. SCHUSTER,
University of California at Los Angeles and RAND, Santa Monica
THOMAS J. SMITH,
Medical College of Virginia Campus, Virginia Commonwealth University
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Independent Report 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 Institute of Medicine in making the 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. The Board wishes to thank the following individuals for their participation in the review of this report:
LU ANN ADAY, Professor, University of Texas School of Public Health
KATHLEEN ANGEL, Midway, Massachusetts
PAUL CALABRESI, Professor of Medicine and Chairman Emeritus, Brown University School of Medicine
WILLIAM H. DANFORTH, Chairman, Board of Trustees, Washington University
HAROLD P. FREEMAN, Director of Surgery, Harlem Hospital Center, and Professor of Clinical Surgery, Columbia University College of Physicians and Surgeons
PATRICIA A. GANZ, Professor, Schools of Medicine and Public Health, University of California at Los Angeles, andDirector, Division of Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center, University of California at Los Angeles
DONALD R. MATTISON, March of Dimes Birth Defects Foundation, White Plains, New York
RUTH McCORKLE, Professor and Director, Center for Excellence in Chronic Illness Care and Chair, Doctoral Program, Yale University School of Nursing
DAVID P. RALL, Former Director of the National Institute of Environmental Health Sciences, Research Triangle Park, North Carolina
ROSEMARY ROSSO, Greater Baltimore-Washington Breast Cancer Advocacy Group, Washington, D.C.
While the individuals listed above have provided constructive comments and suggestions, it must be emphasized that responsibility for the final content of this report rests entirely with the authoring Board and the Institute of Medicine.
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Contents
Summary
1
1
Introduction
13
Role of the National Cancer Policy Board,
14
Framework of the Report,
15
2
The Cancer Care "System"
18
Elements of the Federal Cancer Care Effort,
18
Elements of Cancer Care,
20
Individuals Receiving Cancer Care,
20
Trajectory of Cancer Care,
22
Providers of Cancer Care,
26
Sites of Cancer Care,
30
The Intersection of Cancer Care and Research,
34
Financial Costs of Cancer Care,
35
Impact of a Changing Health Care System on Cancer Care,
36
Managed Care,
37
Self-Funded Health Insurance Plans,
41
Key Findings,
41
3
Ensuring Access to Cancer Care
46
Evidence of Access Problems,
47
Why Do These Differences Exist?
47
Financial Barriers to Access to Cancer Care,
48
Review of the Literature, by Phase of Care,
50
Phase 1: Early Detection,
50
Phase 2: Evaluation of Abnormal Screening Results,
56
Phase 3: Cancer Treatment,
58
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Phase 4: Posttreatment Surveillance and Recurrence Care,
63
Phase 5: End-of-Life Care,
63
Key Findings,
66
4
Defining and Assessing Quality Cancer Care
79
Defining Quality of Care,
79
Why Measure Quality of Cancer Care?
80
How Is Quality Measured?
80
Structural Quality,
80
Process Quality,
81
Outcomes,
84
Variations in Care,
88
How Is Quality-of-Care Information Collected?
88
Evidence of Cancer Care Quality Problems,
90
Breast Cancer,
91
Prostate Cancer,
103
Key Findings,
108
5
Health Care Delivery and Quality of Cancer Care
116
Evaluating the Strength of Evidence from Health Services Research,
117
Case Volume for Hospitals or Individual Physicians,
118
High-Risk Cancer Surgery,
119
Prostate Cancer,
125
Breast Cancer Surgery,
126
Evidence on the Volume-Outcome Relationship from Other Countries,
126
Specialization,
128
Specialization of Facilities,
128
Specialization of Physicians,
130
Managed Care Versus Fee-for-Service Care,
133
Key Findings,
137
6
Cancer Care Quality Assurance
144
Quality Assurance: An Individual Consumer Perspective,
145
Choosing Insurers,
145
Choosing Physicians and Hospitals,
146
Choosing Treatment Options,
148
Use of Quality Information by Consumers,
148
Quality Assurance: A Market Approach,
150
Quality Assurance: The Public-Sector Approach,
151
Health Care Financing Administration,
152
Public Health Monitoring,
154
Agency for Health Care Policy and Research,
154
Quality Assurance: The Health Care Professional Approach,
155
Joint Commission on Accreditation of Healthcare Organizations,
155
National Committee for Quality Assurance,
156
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American Accreditation Health Care Commission, Inc./URAC,
158
Foundation for Accountability,
158
American College of Surgeons' Commission on Cancer,
158
Association of Community Cancer Centers,
160
Quality Improvement Within Health Care Organizations,
163
Practice Guidelines,
164
Key Findings,
174
7
Health Services Research in Cancer Care
180
What Is Health Services Research?
180
Status of Cancer-Related Health Services Research,
181
Research Support,
184
Federally Sponsored Research,
184
Department of Health and Human Services,
184
Department of Defense,
199
Department of Veterans Affairs,
202
Private Organizations Funding Research,
203
American Cancer Society,
203
The Cochrane Collaboration,
207
Key Findings,
207
8
Findings and Recommendations
211
What Is the State of the Cancer Care "System"?
214
What Is Quality Cancer Care and How Is It Measured?
215
What Problems Are Evident in the Quality of Cancer Care and What Steps Can Be Taken to Improve Care?
216
How Can We Improve What We Know About the Quality of Cancer Care?
221
What Steps Can Be Taken to Overcome Barriers of Access to Quality Cancer Care?
223
Glossary
226
Acronyms
231
Index
235
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