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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--> 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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