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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
ASSESSING THE QUALITY OF CANCER CARE
AN APPROACH TO MEASUREMENT IN GEORGIA
Committee on Assessing Improvements in Cancer Care in Georgia
National Cancer Policy Board
Jill Eden and Joseph V. Simone, 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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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
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 a contract between The Georgia Cancer Coalition and the National Academy of Sciences. 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.
Library of Congress Cataloging-in-Publication Data
Assessing the quality of cancer care : an approach to measurement in Georgia / Committee on Assessing Improvements in Cancer Care in Georgia, National Cancer Policy Board ; Jill Eden and Joseph V. Simone, editors.
p. ; cm.
Includes bibliographical references.
ISBN 0-309-09569-7 (pbk.); ISBN 0-309-54814-4 (PDF)
1. Cancer—Patients—Care—Georgia—Quality control—Measurement. 2. Cancer—Georgia—Prevention—Quality control—Measurement. 3. Cancer—Diagnosis—Georgia—Quality control—Measurement. 4. Cancer—Treatment—Georgia—Quality control—Measurement. 5. Outcome assessment (Medical care)—Georgia.
[DNLM: 1. Neoplasms—Georgia. 2. Outcome Assessment (Health Care)—Georgia. 3. Quality Assurance, Health Care—Georgia. QZ 200 A846 2005] I. Eden, Jill. II. Simone, Joseph V. III. National Cancer Policy Board (U.S.). Committee on Assessing Improvements in Cancer Care in Georgia.
RC277.G4A87 2005
362.196′994′009758—dc22
2005007665
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 2005 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America.
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
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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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
COMMITTEE ON ASSESSING IMPROVEMENTS IN CANCER CARE IN GEORGIA
Joseph V. Simone (Chair), President,
Simone Consulting, Dunwoody, GA
Lawrence B. Afrin, Associate Professor of Medicine,
Medical University of South Carolina, Charleston, SC
Tim Byers, Professor of Epidemiology, Program Leader,
Clinical Cancer Prevention and Control, University of Colorado Health Sciences Center, Denver, CO
Vivien W. Chen, Director, Louisiana Tumor Registry, Head of Epidemiology Program,
School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LA
Peter D. Eisenberg, Oncologist,
California Cancer Care, Greenbrae, CA
Barbara Given, University Distinguished Professor,
College of Nursing, Michigan State University, East Lansing, MI
Robert Hiatt, Director, Population Science, Deputy Director,
University of California San Francisco Comprehensive Cancer Center, San Francisco, CA
David Lansky, Director,
Health Program, Markle Foundation, New York, NY
Benjamin Littenberg, Henry and Carleen Tufo Professor of Medicine and Director of General Internal Medicine,
University of Vermont College of Medicine, Burlington, VT
Barbara J. McNeil, Ridley Watts Professor, Head of the Department of Health Care Policy,
Harvard Medical School, Boston, MA
Mack Roach III, Professor,
Department of Radiation Oncology, Medical Oncology and Urology, University of California San Francisco, San Francisco, CA
Consultant
Joseph Lipscomb, Chief,
Outcomes Research Branch, National Cancer Institute, Bethesda, MD (until August 2004)
Staff
Jill Eden, Study Director
Roger C. Herdman, Director,
National Cancer Policy Board
Elizabeth J. Brown, Research Assistant
Editor
Kerry B. Kemp
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
NATIONAL CANCER POLICY BOARD
Joseph V. Simone (Chair), President,
Simone Consulting, Dunwoody, GA
Ellen Stovall (Vice Chair), President and CEO,
National Coalition for Cancer Survivorship, Silver Spring, MD
Bruce W. Stillman (Vice Chair), President,
Cold Spring Harbor Laboratory, Cold Spring Harbor, NY
Jill Bargonetti, Associate Professor,
Department of Biological Sciences, Hunter College, New York, NY
Timothy Eberlein, Bixby Professor and Chairman,
Department of Surgery, Washington University School of Medicine, St. Louis, MO
Kathy Giusti, President,
Multiple Myeloma Research Foundation, New Canaan, CT
Karen Hersey, Senior Intellectual Property 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 G. Kaelin, Professor of Medicine,
Harvard Medical School, Boston, MA
William W. McGuire, Chairman and Chief Executive Officer,
UnitedHealth Group, Minnetonka, MN
John Mendelsohn, President,
University of Texas, M.D. Anderson Cancer Center, Houston, TX
Kathleen Hardin Mooney, Professor,
University of Utah College of Nursing, Salt Lake City, UT
Patricia A. Nolan, Director,
Rhode Island Department of Health, Providence, RI
David Parkinson, Vice-President of Oncology,
Amgen, Inc., Thousand Oaks, CA
John D. Potter, Senior Vice President and Director,
Division of Public Health Sciences, Fred Hutchinson Cancer Research Center and
Professor of Epidemiology,
University of Washington, Seattle, WA
Louise Russell, Research Professor of Economics,
Institute for Health, Rutgers University, New Brunswick, NJ
Thomas J. Smith, Professor,
Division of Hematology, Medical College of Virginia at Virginia Commonwealth University, Richmond, VA
Robert C. Young, President,
American Cancer Society and Fox Chase Cancer Center, Philadelphia, PA
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
National Cancer Policy Board Staff
Roger C. Herdman, Director
Jill Eden, Senior Program Officer
Hellen Gelband, Senior Program Officer
Maria Hewitt, Senior Program Officer
Sharyl Nass, Senior Program Officer
Judith Wagner, Scholar-in-Residence
Penelope Smith, Research Associate
Kathryn Barletta, Research Assistant
Elizabeth J. Brown, Research Assistant
Mary Ann Pryor, Senior Program Assistant
Anike L. Johnson, Administrative Assistant
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
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:
Stephen B. Edge, Roswell Park Cancer Institute
Philip Huang, Texas Department of State Health Services
Elizabeth A. McGlynn, The RAND Corporation
Henry W. Riecken, University of Pennsylvania, Professor Emeritus
Barbara K. Rimer, Lineberger Comprehensive Cancer Center and School of Public Health, University of North Carolina at Chapel Hill
Nancy Weiss, Texas Cancer Registry
Rodger Winn, Clinical Consultant, National Quality Forum
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 Harold C. Sox, Annals of
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
Internal Medicine, American College of Physicians of Internal Medicine, and Melvin Worth, Scholar-in-Residence, Institute of Medicine. Appointed by the National Research Council and Institute of Medicine, they 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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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
Acknowledgments
The Committee on Assessing Improvements in Cancer Care in Georgia wishes to acknowledge the many people whose time and contributions made this report possible.
Agency for Healthcare Research and Quality
Ed Kelley
American Cancer Society
Michael Thun
American Society for Clinical Oncology
Jennifer Padberg
Brown University
Joan Teno
Centers for Disease Control and Prevention
Lesley Given
Amy Harris
Nancy Lee
Fred Stallings
DeKalb Surgical Associates
John Kennedy
Emory University Health Sciences Center and Rollins School of Public Health
Otis Brawley
Jim Curran
Michael Johns
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
Jonathan Liff
Jack Mandel
Jonathan W. Simons
John L. Young
Georgia Cancer Coalition
Kate Canterbury
Maryalice Moses
Nancy Paris
Kathy Russell
Russell Toal
Bill Todd
Georgia Division of Public Health
Rana Bayakly
James Brannon
Dafna Kanny
Linda Martin
Christy McNamara
Kim Redding
Georgia Health Policy Center
Karen Minyard
Georgia Medical Care Foundation
Bill McClellan
Tom W. Williams
Georgia Society of Clinical Oncology
Tom Andrews
Charles Henderson
Frederick M. Schnell
Harvard School of Public Health
Heather Palmer
Institute for Clinical Systems Improvement
Gordon Mosser
Joint Commission on Accreditation of Healthcare Organizations
Elvira Ryan
Marin General Hospital
Lloyd Miyawaki
Miami University of Ohio
John Bailer
Morehouse School of Medicine
Daniel Blumenthal
Nigel Harris
George Rust
Louis Sullivan
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
National Cancer Institute
Neeraj Arora
Molla Donaldson
National Committee for Quality Assurance
Greg Pawlson
Phil Renner
National Quality Forum
Kenneth Kizer
Elaine Power
Northwest Crescent
Debbie Davis
Diane Stapleton
Promina Health System
Betty Castellani
Jeff Etchason
Andrew Morley, Jr.
Southeast Georgia Alliance
W. Kent Guion
J. Ted Holloway
William Hoskins
Southwest Georgia Alliance
Angela Prince
Rita Salain
University of Southern California
David Quinn
University of Wisconsin
June Dahl
Woodruff Foundation
Charles McTier
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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia
Contents
EXECUTIVE SUMMARY
1
Approach to the Study: Key Concepts and Methods,
2
Recommended Measures for Assessing the Quality of Cancer Care in Georgia,
4
Quality Measures Related to Preventing Cancer,
4
Quality Measures Related to Detecting Cancer Early,
7
Quality Measures Related to Diagnosing Cancer,
8
Quality Measures Related to Treating Cancer,
10
Crosscutting Issues in Assessing the Quality of Cancer Care,
13
Looking Ahead to the Implementation of Quality-of-Cancer-Care Measures in Georgia,
13
1
INTRODUCTION
19
Context for This Report,
20
IOM’s Work on Quality of Health Care,
21
Principles and Framework for Assessing Quality,
22
Organization of This Report,
23
2
CONCEPTS, METHODS, AND DATA SOURCES
26
Key Concepts,
27
What Is Good Quality Health Care?,
27
What Are Health Care Quality Measures?,
28
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Key Methods,
30
Guiding Principles and Criteria Used to Select Quality Measures of Cancer Care,
30
Consideration of Levels of Evidence for Quality-of-Cancer-Care Measures,
32
Focus on Clinical Indicators of the Quality of Cancer Care,
33
Focus on Four Common Cancers in Adults,
34
Expert Panel Process,
34
Sources of Quality-of-Cancer-Care Measures Considered,
36
Data for Recommended Quality-of-Cancer-Care Measures in Georgia,
36
Cancer Registries,
38
Medical Records,
44
Administrative Claims,
45
Patient and Population Surveys,
46
Issues in Interpreting Quality-of-Cancer-Care Data,
48
Summary,
49
3
PREVENTING CANCER
54
Recommended Measures for Tracking the Quality of Cancer Prevention,
56
Smoking Rates and Interventions,
56
Trend in Obesity,
58
Cancer Incidence Rates,
60
Data Sources,
62
Summary,
62
Quality Measure Specifications: Preventing Cancer,
64
4
DETECTING CANCER EARLY
79
Recommended Measures for Tracking the Quality of Early Cancer Detection,
81
Use of Cancer Screening Interventions,
81
Cancer Stage at Diagnosis,
88
Data Sources,
92
Summary,
92
Quality Measure Specifications: Detecting Cancer Early,
94
5
DIAGNOSING CANCER
108
Recommended Measures for Tracking the Quality of Cancer Diagnosis,
110
Adequacy of Cancer Diagnostic and Surgical Specimens,
110
Adequacy of Pathology Reporting on Cancer Surgical Specimens,
116
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Documentation of Cancer Pathologic Stage Before Chemotherapy or Radiation Treatment Begins,
123
Data Sources,
125
Summary,
125
Quality Measure Specifications: Diagnosing Cancer,
127
6
TREATING CANCER
160
Recommended Measures for Tracking the Quality of Cancer Treatment,
162
Receipt of Appropriate Primary Therapy for Cancer,
162
Receipt of Appropriate Adjuvant Therapy for Cancer,
168
Receipt of Appropriate Follow-Up After Treatment for Cancer,
172
Minimization of Cancer Patients’ Suffering,
174
Cancer Survival and Mortality Rates,
177
Data Sources,
181
Summary,
181
Quality Measure Specifications: Treating Cancer,
183
7
CROSSCUTTING ISSUES IN ASSESSING THE QUALITY OF CANCER CARE
223
Capturing Cancer Patients’ Experiences,
223
Designing Surveys of Cancer Patients,
224
Potential Topics for Cancer Patient Surveys,
228
Evaluating Disparities in Cancer Care,
230
What Causes Disparities in Health and Health Care?,
230
Data Infrastructure Needed to Reduce Cancer Disparities,
230
Summary,
236
8
LOOKING AHEAD TO THE IMPLEMENTATION OF QUALITY-OF-CANCER-CARE MEASURES
241
1 The use of quality-of-cancer-care measures has a dual purpose: evaluating progress and motivating change,
242
2 GCC should develop a cancer surveillance, monitoring, and evaluation plan that incorporates a strategy for promotion and dissemination,
242
3 Georgia’s quality-of-cancer-care monitoring system should be transparent and very public,
243
4 Monitoring of the quality-of-cancer-care indicators should be managed by the highest level of GCC,
244
5 GCC’s quality-of-cancer-care infrastructure should build on Georgia’s existing measurement and reporting systems,
244
6 Credibility of the system will be paramount: collect, interpret, and present the results carefully,
245
Summary,
245
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APPENDIXES
A
Sources of Cancer-Related Clinical Guidelines and Quality Indicators
247
B
Sources of Data: Surveys and Datasets
257
C
Glossary, Abbreviations, and Acronyms
264
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List of Boxes, Figures, and Tables
Executive Summary
Table
ES-1
Recommended Quality Measures for Tracking Georgia’s Progress in Cancer Control,
5
Chapter 2
Boxes
2-1
Strategic Goals of the Georgia Cancer Coalition,
31
2-2
Levels of Evidence Applied to Clinical Research,
33
2-3
Principal Sources of Candidate Quality-of-Cancer-Care Measures Considered by the IOM Committee,
37
Figures
2-1
Domains of the cancer control continuum with selected examples of activities in each domain,
28
2-2
Sample scoring sheet used to evaluate potential quality measures,
29
2-3
Sample calculation of a quality-of-cancer-care measure (breast cancer screening),
49
Tables
2-1
Incidence and Mortality in Georgia from the Four Most Common Cancers, 2000,
34
2-2
Potential Sources of Data for Quality-of-Cancer-Care Measures and Benchmarks,
39
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2-3
Strengths and Weaknesses of Key Sources of Data for Quality-of-Cancer-Care Measures and Benchmarks,
40
Chapter 3
Box
3-1
Recommended Measures for Tracking the Quality of Cancer Prevention,
55
Figure
3-1
Obesity by body mass index, Georgia, 1990-2002,
60
Tables
3-1
Cigarette Smoking by Adults and Adolescents in Georgia,
58
3-2
Incidence of the Four Leading Cancers in Georgia, by Sex, 2000,
61
3-3
Potential Data Sources for Recommended Measures of the Quality of Cancer Prevention in Georgia,
63
Chapter 4
Boxes
4-1
Recommended Measures for Tracking the Quality of Early Cancer Detection,
80
4-2
Colorectal Cancer Screening Procedures and Recommended Frequency,
86
4-3
The SEER Summary Staging System for Cancer,
89
Figures
4-1
Breast cancer incidence and mortality in Georgia, by age group, 1997-2001,
83
4-2
Incidence of colorectal cancer by age at diagnosis and sex, United States, 1997-2001,
85
4-3
Percentage of adults aged 50 and older in Georgia who ever had a colonoscopy or sigmoidoscopy, by sex, 1993-2002,
87
Tables
4-1
Breast Cancer Screening Rate Among Women over Age 40 in Georgia, by Income and Access to Medical Care, 2002,
84
4-2
Colorectal Cancer Screening Rate Among Adults over Age 50 in Georgia, by Age and Access to Medical Care, 2001,
87
4-3
Survival of Breast Cancer and Colorectal Cancer in the United States, by Stage at Diagnosis, 1995-2000,
88
4-4
Early- and Advanced-Stage Breast and Colorectal Cancers at Diagnosis in Georgia as a Percentage of Total Cases, 1999-2000,
90
4-5
Incidence of Advanced-Stage Breast and Colorectal Cancers, by Age, in the United States, 2000,
91
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4-6
Potential Data Sources for Recommended Measures of the Quality of Cancer Early Detection in Georgia,
93
Chapter 5
Boxes
5-1
Recommended Measures for Tracking the Quality of Cancer Diagnosis,
109
5-2
The Breast Imaging and Reporting Data System (BI-RADS),
112
5-3
NM Stages of Breast Cancer,
115
Figure
5-1
Pathology report checklist for a prostate cancer surgical specimen, College of American Pathologists,
118
Tables
5-1
Cancer Programs in Georgia That Are Certified by the Commission on Cancer,
122
5-2
Potential Data Sources for Recommended Measures of the Quality of Cancer Diagnosis in Georgia,
126
Chapter 6
Boxes
6-1
Recommended Measures for Tracking the Quality of Cancer Treatment,
161
6-2
Determining the Risk of Recurrence in Prostate Cancer Patients,
165
6-3
Caveat Emptor: Interpreting Cancer Survival Statistics,
179
Figures
6-1
Mortality rate for each of four leading cancers in Georgia, 1994-2002,
180
6-2
Mortality rate for all cancers in Georgia, 1994-2002,
180
Tables
6-1
Relative Survival Rates for Breast, Colorectal, Lung and Bronchus, and Prostate Cancers,
178
6-2
Potential Data Sources for Recommended Measures of the Quality of Cancer Treatment in Georgia,
182
Chapter 7
Boxes
7-1
Rapidly Changing Demographics in Georgia,
232
7-2
Standardizing Racial and Ethnic Categories for Public Policy Uses,
234
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Tables
7-1
Examples of Survey Instruments That Measure the Patient Experience and Quality of Life,
225
7-2
Potential Domains and Topics for Cancer Patient Surveys,
229
7-3
Incidence and Mortality Rates for Four Leading Cancers in Georgia, by Gender, Race, and Ethnicity, 2001,
231
7-4
Percentage of Nonelderly Persons in Georgia Who Are Uninsured, by Race and Ethnicity, 2002-2003,
233
7-5
Percentage of Persons in Georgia Who Are Living in Poverty, by Race and Ethnicity, 2002-2003,
233
Chapter 8
Figure
8-1
Schematic of the Georgia Cancer Coalition’s Quality Monitoring, Surveillance, and Evaluation Unit,
243
