DELIVERING
HIGH-QUALITY
CANCER CARE
Charting a New Course for a System in Crisis
Committee on Improving the Quality of Cancer Care:
Addressing the Challenges of an Aging Population
Board on Health Care Services
Laura A. Levit, Erin P. Balogh, Sharyl J. Nass, and
Patricia A. Ganz, Editors
INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES
THE NATIONAL ACADEMIES PRESS
Washington, D.C.
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW 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 Nos. HHSN261200900003C and 200-2011-38807, TO #13 between the National Academy of Sciences and the National Cancer Institute and the Centers for Disease Control and Prevention respectively. This study was also supported by AARP; the American Cancer Society; the American College of Surgeons, Commission on Cancer; the American Society for Radiation Oncology; the American Society of Clinical Oncology; the American Society of Hematology; the California HealthCare Foundation; LIVESTRONG; the National Coalition for Cancer Survivorship; the Oncology Nursing Society; and Susan G. Komen for the Cure. 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-13: 978-0-309-28660-2
International Standard Book Number-10: 0-309-28660-3
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Copyright 2013 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.
Cover credit: Original oil painting, “Day 15 Hope,” reproduced by permission from Sally Loughridge, Rad Art: A Journey Through Radiation Treatment (Atlanta: American Cancer Society, 2012), 31.
Suggested citation: IOM (Institute of Medicine). 2013. Delivering high-quality cancer care: Charting a new course for a system in crisis. Washington, DC: The National Academies Press.
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. C. D. Mote, Jr., 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. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council.
COMMITTEE ON IMPROVING THE QUALITY OF CANCER CARE:
ADDRESSING THE CHALLENGES OF AN AGING POPULATION
PATRICIA A. GANZ (Chair), Distinguished University Professor, University of California, Los Angeles, Schools of Medicine & Public Health, and Director, Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center
HARVEY JAY COHEN, Walter Kempner Professor of Medicine, and Director, Center for the Study of Aging and Human Development, Duke University Medical Center
TIMOTHY J. EBERLEIN, Bixby Professor and Chair, Department of Surgery, Washington University School of Medicine; Spencer T. and Ann W. Olin Distinguished Professor; and Director, Siteman Cancer Center at Barnes-Jewish Hospital, Washington University School of Medicine
THOMAS W. FEELEY, Helen Shafer Fly Distinguished Professor of Anesthesiology, Head, Institute for Cancer Care Innovation, and Head, Division of Anesthesiology and Critical Care, The University of Texas MD Anderson Cancer Center
BETTY R. FERRELL, Professor and Research Scientist, City of Hope National Medical Center
JAMES A. HAYMAN, Professor, Department of Radiation Oncology, University of Michigan
KATIE B. HORTON, Research Professor, George Washington University School of Public Health and Health Services, Department of Health Policy
ARTI HURRIA, Associate Professor, and Director, the Cancer and Aging Research Program, City of Hope National Medical Center
MARY S. McCABE, Director, Cancer Survivorship Program, Memorial Sloan-Kettering Cancer Center, and Lecturer, Division of Medical Ethics, Weill Medical College, Cornell University
MARY D. NAYLOR, Marian S. Ware Professor in Gerontology, and Director, New Courtland Center for Transitions and Health, University of Pennsylvania, School of Nursing
LARISSA NEKHLYU DOV, Associate Professor, Department of Population Medicine, Harvard Medical School, and Internist, Harvard Vanguard Medical Associates
MICHAEL N. NEUSS, Chief Medical Officer, and Professor, Department of Medicine, Vanderbilt-Ingram Cancer Center, Vanderbilt University Medical Center
NOMA L. ROBERSON, Cancer Research Scientist, Roswell Park Cancer Institute (Retired)
YA-CHEN TINA SHIH, Associate Professor, Section of Hospital Medicine, Department of Medicine, Pritzker School of Medicine and Director, the Economics of Cancer Program, The University of Chicago
GEORGE W. SLEDGE, JR., Chief of Oncology and Professor of Medicine, Stanford University School of Medicine
THOMAS J. SMITH, Director of Palliative Medicine and the Harry J. Duffey Family Professor of Palliative Medicine and Professor of Oncology, Johns Hopkins School of Medicine
NEIL S. WENGER, Professor, Division of General Internal Medicine and Health Services Research, University of California, Los Angeles, School of Medicine
Study Staff
LAURA LEVIT, Study Director
ERIN BALOGH, Associate Program Officer
PAMELA LIGHTER, Research Assistant
MICHAEL PARK, Senior Program Assistant
PATRICK BURKE, Financial Associate
SHARYL NASS, Director, National Cancer Policy Forum
ROGER HERDMAN, Director, Board on Health Care Services
Consultants
DANIEL MASYS, Affiliate Professor, Biomedical and Health Informatics, University of Washington
TRACY SPINKS, Project Director, The University of Texas MD Anderson Cancer Center
VICKIE WILLIAMS, Project Coordinator, Young Breast Cancer Survivorship Program, University of California, Los Angeles-LIVESTRONG Survivorship Center of Excellence, Jonsson Comprehensive Cancer Center
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 M. ARNOLD, University of Pittsburgh Medical Center
EDWARD J. BENZ, JR., Harvard Medical School and Dana-Farber Cancer Institute
AMY BERMAN, John A. Hartford Foundation
CATHY BRADLEY, Virginia Commonwealth University
DEBORAH BRUNER, Emory University
KAREN S. COOK, Stanford University
DEBRA GORDON, University of Washington School of Medicine
DEBRA J. HOLDEN, RTI International
J. RUSSELL HOVERMAN, The U.S. Oncology Network and Texas Oncology
CARLOS ROBERTO JAÉN, University of Texas Health Science Center at San Antonio
KENNETH W. KIZER, University of California, Davis, Health System
RUTH McCORKLE, Yale University School of Nursing
DIANE E. MEIER, Mount Sinai School of Medicine
LEE N. NEWCOMER, UnitedHealthcare
DAVID B. REUBEN, University of California, Los Angeles
LAWRENCE N. SHULMAN, Dana-Farber Cancer Institute
EDWARD H. WAGNER, Group Health Research Institute
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, Dartmouth Institute for Health Policy and Clinical Practice, and PATRICIA FLATLEY BRENNAN, University of Wisconsin–Madison. 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.
Acknowledgments
The committee and staff are indebted to a number of individuals and organizations for their contributions to this report. The following individuals conducted background research for the committee:
Lindsay Forbes, Intern, Institute of Medicine (Summer 2011)
Randy Gale, Fellow, Institute of Medicine (2010-2011)
Ana Hincapie, Mirzayan Science and Technology Fellow, Institute of Medicine (Winter 2012)
Cher Huang, Intern, MIT in Washington Program (Summer 2013)
Adam Schickedanz, Intern, Institute of Medicine (Summer 2012)
We extend thanks to Eric Slade and Eric Slade Productions for working with the committee to produce the dissemination video for this report. We also extend special thanks to the following individuals who were essential sources of information, generously giving their time and knowledge to further the committee’s efforts.
Peter Bach, Attending Physician, Memorial Sloan-Kettering Cancer Center
Dikla Benzeevi, 11-Year Metastatic Breast Cancer Survivor, Breast Cancer Patient Advocate
Amy Berman, Senior Program Officer, Hartford Foundation
Helen Burstin, Senior Vice President for Performance Measures, National Quality Forum
Eric Fennel, Senior Advisor of Policy and Programs, Center for Medicare and Medicaid Innovation
John Frenzel, Chief Medical Information Officer, University of Texas MD Anderson Cancer Center
Kristen McNiff, Director, Quality and Performance Measurement, American Society of Clinical Oncology
Mark Miller, Executive Director, Medicare Payment Advisory Commission
Stephen Palmer, Director, Office of e-Health Coordination, Texas Health and Human Services Commission
Maddie Peterson, Cancer Survivor
Willie C. Roberson, Clergyman/Pastor, Saint’s Home Church of God in Christ
Joesph V. Simone, President, Simone Consulting
Ron Walters, Associate Vice President of Medical Operations and Informatics, The University of Texas MD Anderson Cancer Center
Peter Yu, Chair, Health Information Technology Work Group, American Society of Clinical Oncology
In addition, we thank the individuals who spoke at the October 2012 National Cancer Policy Forum workshop Delivering Affordable Cancer Care in the 21st Century. Workshop presentations and discussions informed committee deliberations. Speakers included
Denise R. Aberle, Professor of Radiology and Bioengineering, David Geffen School of Medicine, University of California, Los Angeles
Amy P. Abernethy, Associate Professor, Duke University School of Medicine
Peter B. Bach, Attending Physician, Memorial Sloan-Kettering Cancer Center
Justin E. Bekelman, Assistant Professor of Radiation Oncology, Member, Abramson Cancer Center
Otis W. Brawley, Chief Medical Officer, American Cancer Society
Renzo Canetta, Vice President, Oncology Global Clinical Research, Bristol-Myers Squibb Company
Susan Dentzer, Editor-in-Chief, Health Affairs
Craig Earle, Medical Oncologist, Odette Cancer Centre
Peter D. Eisenberg, Medical Director, Marin Specialty Care
Ezekiel J. Emanuel, Diane v.S. Levy & Robert M. Levy University Professor, Perelman School of Medicine, University of Pennsylvania
Robert L. Erwin, President, Marti Nelson Cancer Foundation
Harvey V. Fineberg, President, Institute of Medicine
James S. Goodwin, George and Cynthia Mitchell Distinguished Chair in Geriatric Medicine, University of Texas Medical Branch
Robert J. Green, Medical Oncologist and Chief Medical Officer, Cancer Clinics of Excellence
Jessie Gruman, President, Center for Advancing Health
Jim C. Hu, Henry E. Singleton Chair in Urology, University of California, Los Angeles
Thomas J. Kean, President and Chief Executive Officer, C-Change
Barnett S. Kramer, Director, Division of Cancer Prevention, National Cancer Institute
Allen S. Lichter, Chief Executive Officer, American Society of Clinical Oncology
Mark B. McClellan, Senior Fellow, The Brookings Institution
John Mendelsohn, Co-Director, Khalifa Institute for Personalized Cancer Therapy, The University of Texas MD Anderson Cancer Center
Therese M. Mulvey, Physician-in-Chief, Southcoast Centers for Cancer Care
Lee N. Newcomer, Senior Vice President, Oncology UnitedHealthcare
Jeffrey Peppercorn, Associate Professor of Medicine, Duke University Medical Center
Scott Ramsey, Full Member, Cancer Prevention Program, Fred Hutchinson Cancer Research Center
Lowell E. Schnipper, Theodore W. & Evelyn G. Berenson Professor, Harvard Medical School
Joanne Schottinger, Clinical Lead, Cancer, Kaiser Permanente Care Management Institute
Deborah Schrag, Associate Professor of Medicine, Harvard Medical School
Veena Shankaran, Assistant Professor of Medical Oncology, University of Washington School of Medicine
Jennifer Temel, Associate Professor of Medicine, Harvard Medical School
Robin Yabroff, Epidemiologist, National Cancer Institute
Funding for this study was provided by AARP; the American Cancer Society; the American College of Surgeons, Commission on Cancer; the American Society for Radiation Oncology; the American Society of Clinical Oncology; the American Society of Hematology; the California HealthCare Foundation; Centers for Disease Control and Prevention; LIVESTRONG; the National Cancer Institute; the National Coalition for Cancer Survivorship; the Oncology Nursing Society; and Susan G. Komen for the Cure. The committee appreciates the opportunity and support extended by these sponsors for the development of this report.
Finally, many within the Institute of Medicine were helpful to the study staff. We would like to thank Clyde Behney, Marton Cavani, Laura DeStefano, Chelsea Frakes, Jim Jensen, Jillian Laffrey, Tracy Lustig, Abbey Meltzer, Lauren Tobias, and Jennifer Walsh.
Preface
A cancer diagnosis is one of the most feared events. Rarely diagnosed before the late 20th century, cancer now competes with cardiovascular disease as the leading cause of death in North America. With people living longer, the continued use of tobacco products, infectious diseases that transmit cancer-causing viruses and other pathogens, and an obesity epidemic, the cancer burden is projected to increase substantially in the United States over the coming decades. Almost 14 million people, more than 4 percent of the U.S. population, are cancer survivors; by 2012 this will grow to 18 million cancer survivors. Survivors have complex journeys, and even after completing cancer treatment, must engage in medical follow-up care to help manage the long-term and late effects of their treatments, and monitor the possibility of cancer recurrence or development of new secondary cancers.
For the 1.6 million people in the United States who join the ranks of newly diagnosed cancer patients each year, the cancer care system can be overwhelming. The complexity of the cancer care system is driven by the biology of cancer itself, the multiple specialists involved in the delivery of cancer care, as well as a health care system that is fragmented and often ill prepared to meet the individual needs, preferences, and values of patients who are anxious, symptomatic, and uncertain about where to obtain the correct diagnosis, prognosis, and treatment recommendations. Moreover, older individuals comprise the majority of people with cancer. Addressing the unique needs of an aging population of patients diagnosed with cancer, who are already experiencing comorbid conditions and loss of independence, is a critical challenge. We are not prepared to take care of this growing cancer patient population, as few of our standard treatment
approaches have been evaluated in this setting. Instead, we extrapolate from trial results and toxicities that emerge from treating younger and healthier patients with the same diagnoses. On top of this, the quality of cancer care varies tremendously.
As someone who has been an oncology practitioner for almost 40 years, I have seen dramatic changes in the treatment of cancer that have benefited my patients—greater precision in diagnosis, surgical treatments that are less radical and disfiguring, diagnoses of earlier stage disease as a result of screening, and more long-term disease-free survivors. However, the human and economic costs of these advances are enormous. Cancer patients often endure protracted periods of primary and adjuvant therapies, multimodal treatments with substantial toxicities and comorbidities, which may take years of physical and psychological recovery, with great financial hardship and social disruption. Palliative care and hospice services are underutilized and usually employed much later in the course of a patient’s cancer journey than recommended. Patients and their families often play the role of principal communicator as they visit one cancer treatment specialist after another, conveying the recommendations to subsequent consultants in a serial fashion. Coordination of complex cancer care, using a common electronic health record, with treating specialists who jointly discuss the patient’s case and then confer with the patient about their recommendations, is the exception and not the rule. Receipt of psychosocial support at the time of diagnosis and during treatment is also rare, as these “high-touch” services are seldom compensated through health insurance and are usually supported through ad hoc philanthropic funding rather than institutional or clinical practice resources.
We all want the best care for our family members and friends, but our current cancer care delivery system falls short in terms of consistency in the delivery of care that is patient centered, evidence based, and coordinated. We are at an inflection point in terms of repairing the cancer care delivery system. If we ignore the signs of crisis around us, we will be forced to deal with an increasingly chaotic and costly care system, with exacerbation of existing disparities in the quality of cancer care.
How can we change this situation? This report is the result of the thoughtful deliberations of our study committee, as well as the hard work of the Institute of Medicine (IOM) staff who supported our quest for the evidence behind the report’s ten recommendations. Those recommendations are based on a unifying conceptual framework for improving the quality of cancer care. This report also rests on the foundation of the transformative 1999 IOM report Ensuring Quality Cancer Care, which called for improvements in the technical quality of cancer care, the use of evidence-based guidelines to direct care, the use of electronic data capture and quality monitoring, as well as the assurance of access to cancer care for all, including high-quality end-of-life care. While that report generated
much attention in the oncology community, and drove some concerted action among oncology professional organizations and the federal government, a critical review of progress since the report’s recommendations were issued identified many continuing gaps and new challenges that could not have been anticipated. Sadly, the key recommendations regarding implementation of evidence-based care and quality monitoring have had limited uptake, and are needed even more today due to the expansion in cancer diagnostics, imaging, and therapeutics in the past decade, as well as the expected growth in the number of new cancer patients. The cost of cancer care is rising much faster than for other diseases, and there are few systematic efforts or incentives to eliminate waste and the use of ineffective therapies.
Facing this crisis, the committee’s vision for tackling these challenges and creating a high-quality cancer care delivery system is based on the IOM’s extensive work defining the quality of health care, with its patient-centered focus and emphasis on the needs, values, and preferences of patients, including advance care planning. Patient-centered care is at the core of a high-quality cancer care delivery system, as depicted by the study committee’s conceptual framework, and is something that is feasible in every clinical care setting, and can be supported by existing information technology if necessary (e.g., guidelines, evidence syntheses, pathways). Patient-clinician communication that focuses on information sharing about the diagnosis, prognosis, and treatment options, and that elicits the patient’s preferences for treatment is central to high-quality cancer care. Surrounding the patient and their family caregivers are members of a well-prepared cancer care delivery team that is able to ensure coordinated and comprehensive patient-centered care and close collaboration with other health care professionals not directly involved in cancer care delivery, such as geriatric specialists and primary care clinicians. Because evidence-based care is also at the heart of a high-quality cancer care delivery system, research must fill important gaps in our knowledge, especially pertaining to how best to treat older cancer patients and others who have multiple comorbid conditions in addition to cancer. Further, clinical trials and comparative effectiveness research must include data collection that reflects patient-reported outcomes, as well as information about other relevant patient characteristics and behaviors, to provide accurate information that will inform future patients about what they can expect to experience from recommended cancer treatments.
A high-quality and efficient information technology infrastructure is critical to collecting these outcome data from ongoing clinical practice at the point of care, along with specific information about the cancer, its treatment, and the clinical outcomes of treatments received over time. That data collection system, as depicted in the conceptual framework, will be at the center of a rapid learning health care system which will, in turn,
rely on regular assessments of the quality of care delivered in relationship to the costs of the associated care. Understanding how well we are doing with individual cancer patients, as well as groups of similar patients, could allow us to develop strategies for performance improvement and identify gaps in care that need our attention. Finally, in the high-quality cancer care delivery system of the future, payment models and financial incentives must focus on improving the affordability and quality of care for patients and payers. Eliminating disparities in access to high-quality cancer care for all members of our society remains a challenge; however, without relevant patient-centered information and quality measurement, we will not be able to create a more equitable system.
Although the committee’s conceptual framework may seem far removed from much current oncology practice, the committee believes that most elements of the framework are in place or are being developed. In many ways, oncology care is an extreme example of the best and worst in the health care system today—highly innovative targeted diagnostics and therapeutics alongside escalating costs that do not consistently relate to the clinical value of treatments, tremendous waste and inefficiencies due to poor coordination of care, and lack of adherence to evidence-based guidelines with frequent use of ineffective or inappropriate treatments.
In the setting of this crisis, there are many opportunities. If we can use this framework to successfully address the challenges to delivering high-quality oncology care, the same principles will be transferrable to other complex and chronic conditions that place continued demands on the health care system. In my closing years as an oncology professional, I dream of a cancer care delivery system that will ensure access to high-quality, patient-centered, evidence-based care, and that patients with cancer will have care teams supported by a system that enables them to provide compassionate and timely care.
It has been my privilege to serve as the chair of this study committee and to learn so much from the other committee members who worked extremely hard and collaboratively to refine the recommendations and evidence that we present in this report. As someone who was a reviewer of the 1999 IOM report, I feel that I have come full circle in helping to lead the efforts of this committee. I am sure that a decade from now, someone else will be reviewing these recommendations and they will either be commenting about how foolish we were or complimenting us on our vision and prescience. I hope the latter is the case and that this report will chart a new course for the cancer care delivery system that ensures high-quality, evidence-based care for all.
Patricia A. Ganz, Chair
Committee on Improving the Quality of Cancer Care:
Addressing the Challenges of an Aging Population
3 PATIENT-CENTERED COMMUNICATION AND SHARED DECISION MAKING
Defining Patient-Centered Communication and Shared Decision Making
The Importance of Patient-Centered Communication and Shared Decision Making in Cancer
Challenges to Patient-Centered Communication and Shared Decision Making in Cancer
Improving Patient-Centered Communication and Shared Decision Making in Cancer
Improving Patient-Centered Communication and Shared Decision Making at the End of Life
4 THE WORKFORCE CARING FOR PATIENTS WITH CANCER
Defining the Workforce Caring for Patients with Cancer
Ensuring the Quantity and Quality of the Workforce
Annex 4-1 Professionals Involved in Cancer Care
5 THE EVIDENCE BASE FOR HIGH-QUALITY CANCER CARE
How the Evidence Base for Cancer Care Decisions Is Generated
Improving the Breadth of Information Collected
Improving the Depth of Information Collected
Improving the Use of Information Technology
6 A LEARNING HEALTH CARE INFORMATION TECHNOLOGY SYSTEM FOR CANCER
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Boxes, Figures, and Tables
BOXES
S-1 The Crisis in Cancer Care Delivery
S-2 Goals of the Recommendations
1-1 The Crisis in Cancer Care Delivery
1-2 Examples of Progress to Date in Implementing the Institute of Medicine’s 1999 Recommendations
2-1 Domains of a Geriatric Assessment
3-1 Questions That Patients with Cancer Can Discuss with Their Clinicians
3-2 Examples of Decision Support Programs
3-3 Information in a Cancer Care Plan
3-4 Challenges to the Delivery of Palliative Care Across the Cancer Care Continuum
4-1 The Roles of Primary Care Clinicians in Caring for Patients with Cancer
4-2 Principles of Team-Based Health Care
5-1 Types of Comparative Effectiveness Research Studies
6-1 A National Cancer Course Guidance Infrastructure
6-2 IOM Recommendations on the Foundational Elements of a Learning Health Care System
7-1 IOM Standards for Developing Trustworthy Clinical Practice Guidelines (CPGs)
8-1 Defining Value in Cancer Care
8-2 Medicare Prescription Drug, Improvement, and Moderization Act
FIGURES
S-1 Domains of the cancer care continuum with examples of activities in each domain
S-2 An illustration of the committee’s conceptual framework for improving the quality of cancer care
1-1 Domains of the cancer care continuum with examples of activities in each domain
1-2 The majority of cancer diagnoses are in older adults
1-3 The majority of cancer deaths are in older adults
1-4 The majority of cancer survivors are older adults
1-5 An illustration of the committee’s conceptual framework for improving the quality of cancer care
2-1 Distribution of the projected older population by age in the United States, 2010 to 2050
2-2 Hispanics and non-Hispanics as a percentage of the U.S. population, 2000-2050
2-3 Projected cases of all invasive cancers in the United States by race and ethnicity
2-4 Age-specific incidence and mortality rates for all cancers combined, 2006-2010
3-1 Model of patient-centered care
3-2 People want to be involved in understanding evidence and making decisions about their care
3-3 Relationship of curative or life-prolonging treatment to palliative care for cancer
4-1 An illustration of a coordinated workforce
4-2 An illustration of a coordinated cancer care team, 176
TABLES
2-1 Projected U.S. Population, by Race: 2000-2050
2-2 Cancer Incidence Rates by Race, 2006-2010, from 18 SEER Geographic Areas
2-3 Estimated Number of U.S. Cancer Survivors by Sex and Age as of January 1, 2012
2-4 Death Rates by Race in 2006-2010 from 18 SEER Geographic Areas
2-5 Examples of Age-Related Changes in Each Organ of the Functional System
2-6 Examples of U.S. Governmental Organizations Involved in Improving Quality of Cancer Care
3-1 Important Functions of Patient-Clinician Communication
3-2 Examples of Web-Based Information, Resources, and Tools for Patients
3-4 Example of a Written Plan for Communication
3-5 Psychosocial Needs and Formal Services to Address Them
3-6 Examples of Hospice Care Models
6-1 Characteristics of a Learning Health Care System
6-2 Examples of Efforts to Develop Learning Health Care Systems
7-1 Examples of Quality Metrics Projects Relevant to Cancer Care
7-2 Types of Quality Metrics Used in Cancer Care
7-3 Examples of Organizations That Establish Clinical Practice Guidelines in Cancer
7-4 Examples of Performance Improvement Strategies
8-1 Examples of Payment Reform Models Relevant to Cancer Care
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AACN |
American Association of Colleges of Nursing |
AAMC |
Association of American Medical Colleges |
ABIM |
American Board of Internal Medicine |
ACA |
Patient Protection and Affordable Care Act |
ACO |
accountable care organization |
ACoS |
American College of Surgeons |
ACOVE |
Assessing Care of Vulnerable Elders |
ACS |
American Cancer Society |
ADLs |
activities of daily living |
AHRQ |
Agency for Healthcare Research and Quality |
ALK |
anaplastic lymphoma kinase |
AML |
acute myeloid leukemia |
APRN |
advanced practice registered nurse |
ASCO |
American Society for Clinical Oncology |
ASP |
average sales price |
ASTRO |
American Society for Radiation Oncology |
AWP |
average wholesale price |
BPCA |
Best Pharmaceuticals for Children Act |
CBO |
Congressional Budget Office |
CDC |
Centers for Disease Control and Prevention |
CDRP |
Cancer Disparities Research Partnership |
CED |
coverage with evidence development |
CER |
comparative effectiveness research |
CMOH |
Consultants in Medical Oncology and Hematology |
CMS |
Centers for Medicare & Medicaid Services |
CoC |
Commission on Cancer |
COI |
conflict of interest |
COME HOME |
Community Oncology Medical Homes |
CPG |
clinical practice guideline |
CPR |
cardiopulmonary resuscitation |
CRCHD |
Center to Reduce Cancer Health Disparities |
CT |
computed tomography |
CTCAE |
Common Terminology Criteria for Adverse Events |
DCPC |
Division of Cancer Prevention and Control |
DNP |
doctorate of nursing practice |
ECHO |
Extension for Community Healthcare Outcomes |
EGFR |
epidermal growth factor receptor |
EHB |
essential health benefit |
EHR |
electronic health record |
ER |
estrogen receptor |
FDA |
Food and Drug Administration |
FMAP |
Federal Medical Assistance Percentages |
FPL |
federal poverty level |
GAO |
Government Accountability Office |
GDG |
guideline development group |
GDP |
gross domestic product |
GME |
graduate medical education |
HER |
human epidermal growth factor receptor-2 |
HHS |
U.S. Department of Health and Human Services |
HIPAA |
Health Insurance Portability and Accountability Act |
HITECH |
Health Information Technology for Economic and Clinical Health |
HRSA |
Health Resources and Services Administration |
IADLs |
instrumental activities of daily living |
IMRT |
intensity-modulated radiotherapy |
IOM |
Institute of Medicine |
IRB |
institutional review board |
IT |
information technology |
MAP |
Measures Applications Partnership |
MB-CCOP |
Minority-Based Community Clinical Oncology Programs |
MedPAC |
Medicare Payment Advisory Commission |
MMA |
Medicare Prescription Drug, Improvement, and Modernization Act |
NCCN |
National Comprehensive Cancer Network |
NCCS |
National Coalition for Cancer Survivorship |
NCDB |
National Cancer Data Base |
NCI |
National Cancer Institute |
NCPF |
National Cancer Policy Forum |
NCTN |
National Clinical Trials Network |
NIA |
National Institute on Aging |
NIH |
National Institutes of Health |
NPP |
National Priorities Partnership |
NQF |
National Quality Forum |
NQMC |
National Quality Measures Clearinghouse |
NSQIP |
National Surgical Quality Performance Improvement Program |
ONC |
Office of the National Coordinator for Health Information Technology |
PA |
physician assistant |
PACT |
Planning Actively for Cancer Treatment [Act of 2013] |
PCMH |
patient-centered medical home |
PCORI |
Patient-Centered Outcomes Research Institute |
PCPI |
Physician Consortium for Performance Improvement |
PET |
positron emission tomography |
PPS |
prospective payment system |
PREA |
Pediatric Research Equity Act |
PRO |
patient-reported outcome |
PROMIS |
Patient-Reported Outcome Measurement Information System |
QOPI |
Quality Oncology Practice Initiative |
RCT |
randomized controlled trial |
RN |
registered nurse |
SEER |
Surveillance, Epidemiology, and End Results |
SES |
socioeconomic status |
SR |
systematic review |
USPSTF |
U.S. Preventive Services Task Force |
VA |
U.S. Department of Veterans Affairs |
VBID |
value-based insurance design |
VBP |
value-based purchasing |