WASHINGTON—An aging population and rising cancer incidence, along with increasing scientific complexity and rapidly escalating costs of care, are placing the U.S. cancer care system in crisis mode, according to a new report from the Institute of Medicine (IOM). The comprehensive document, “Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis,” released here during a public webinar, describes a care system that is fragmented, delivers care that often does not meet patient preferences, and underuses palliative care and hospice services.
The numbers alone documented in the report show why the country's cancer care is in a crisis that is likely to worsen if steps aren't taken to reduce its potentially devastating consequences: Today some 14 million Americans have been diagnosed with cancer, and more than 1.6 million new cases are diagnosed each year. By 2022, projections are that there will be 18 million US cancer survivors, and by 2030 cancer incidence is expected to rise to 2.3 million.
The number of older Americans—those most likely to develop cancer—is expected to double between 2010 and 2030, contributing to an expected 30 percent increase in the number of cancer survivors from 2012 to 2022 and a 45 percent rise in cancer incidence by 2030. The cost of cancer care, which is escalating much faster than that of other sectors of medicine, is expected to rise from $125 billion in 2010 to $173 billion by 2020, a 39 percent increase. In 2004 that cost was $72 billion.
Update from 1999 Report
The IOM report, which sets forth a detailed framework for improving the quality of cancer care, updates a 1999 report from the institute, “Ensuring Quality Cancer Care,” which called for improvement in the technical quality of cancer care, use of evidence-based guidelines, organized collection of electronic data, quality monitoring, and better access to care for all cancer patients.
The 2013 report focuses more intensively on patient-centered care aligned with patients' values and preferences (including end-of-life care); better coordination and less fragmentation of care; problems inherent in treating an aging population with comorbid conditions; failure to use evidence-based care; over-utilization and inappropriate use of care; and an expected oncology workforce shortage.
“We do not want to frighten or scare anyone. ... that is not our intent,” said Patricia A. Ganz, MD, Chair of the 17-member multidisciplinary IOM committee that wrote the report. Rather, said Ganz, Director of Cancer Prevention and Control Research at UCLA's Jonsson Comprehensive Cancer Center and Professor of Health Policy and Management at UCLA's Fielding School of Public Health, the committee's intention was to make recommendations that would help lead to better coordination of complex cancer care that is in line with what the patient wants and that avoids wasteful and unnecessary care.
In her preface to the new report, she writes: “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.”
In many ways, she continued, “oncology care is an extreme example of the best and worst in the health care system today,” because it provides highly innovative, targeted care alongside escalating costs that are not always justified by evidence-based studies.
The earlier report was considered “somewhat revolutionary” in the oncology community when it came out, Ganz said, in that it called for major changes in the health systems delivery infrastructure. Since the new IOM report focuses more on the individual cancer patient, the information emphasizes that patients want to be involved and should be involved in their care: “They want to be told the truth about their care, even though it may be uncomfortable or unpleasant,” said Ganz.
Physicians, therefore, need to talk to patients in depth at the time of diagnosis about their preferences, a conversation that will lead to better compliance, better outcomes, and fewer complications.
“We understand that physicians are stretched thin,” said Ganz, but if this conversation takes place early, it can be valuable not only in respecting patients' wishes, but also in eliminating wasteful and futile care. “So often patients are not given an opportunity to voice their preferences.”
She cited the probable futility of adding fourth or fifth lines of chemotherapy to treatment for patients with advanced lung cancer—treatment that adds toxicity at the end of life; is very costly; is unlikely to confer a benefit; and that may not be what the patient wants.
Another member of the IOM committee, Noma L. Roberson, PhD, a retired cancer research scientist at Roswell Park Cancer Institute who also participated in the webinar, said she came to appreciate fully the value of patient-centered care—including information gathering and sharing and communication—on a personal level when her husband was diagnosed with prostate cancer.
Added committee member Mary D. Naylor, PhD, RN, FAAN, the Marian S. Ware Professor in Gerontology and Director of the New Courtland Center for Transitions and Health at the University of Pennsylvania School of Nursing: In focusing more specifically and intentionally on patient-centered care, it is important for health care professionals to look carefully at the new face of cancer and aging. Older cancer patients are most likely living with multiple comorbid conditions, she said, and family members—whom she called the “invisible workforce”—are probably providing much of their care.
Extend Patent Protection
The new report does not suggest changes to the current clinical trial system, but it does recommend extending the patent protection as an incentive for companies that elect to test new cancer drugs in secondary studies of older populations. Ganz noted that older people are often excluded from trials not because of age per se, but because of comorbid conditions.
The report also recommends exploring different forms of payment models for oncology services, such as bundled payments and the oncology medical home: “There are new models of care that have not been fully evaluated, but they have promise,” she said.
American Society of Clinical Oncology President Clifford A. Hudis, MD, hailed the findings of the report, noting in a statement (ASCO was also one of 14 sponsors of the new report): “We commend the IOM for this landmark report and will work with policymakers, patients, health IT groups, and the oncology community to implement its recommendations.
“For oncologists, continuously improving the quality of cancer care is at the core of our mission. This report provides important strategies we can use now to reach this goal, and ASCO already has efforts in place that will advance many of the IOM's recommendations.”
Hudis, Chief of the Breast Cancer Medicine Service at Memorial Sloan-Kettering Cancer Center, also referred to ASCO's Quality Oncology Practice Initiative (QOPI), launched in 2006, as the first national program to help oncology practices improve the quality of their care. He also cited ASCO's 2011 recommendations to improve physician-patient communication on the full range of options for patients with advanced cancer, and the organization's new CancerLinQ, an initiative to help achieve a continuous learning system in oncology.
The National Coalition for Cancer Survivorship (NCCS), another sponsor of the report, also hailed the findings. NCCS cites federal legislation, H.R. 2477, the Planning Actively for Cancer Treatment (PACT) Act for Medicare patients (which mandates a written care plan), as a step toward realizing the IOM's vision of patient-centered care for older cancer patients. PACT has been introduced by Reps. Lois Capps (D-CA) and Charles Boustany, Jr., MD (R-LA).
“The PACT act and this groundbreaking IOM report have sent clear signals that change in the cancer care system is necessary, and we now have consensus on where to start,” said Shelley Fuld Nasso, NCCS Senior Director of Policy. “We have an opportunity to make cancer patients, and the system that cares for them, better. NCCS pledges to do our part of implement the IOM's recommendations.”
Also pledging to support the IOM report's recommendations was the American Society for Radiation Oncology: Michael L. Steinberg, MD, the organization's Chairman and Professor and Chair of the Department of Radiation Oncology at UCLA's David Geffen School of Medicine, said: “We commend the extraordinary efforts of the IOM to produce this extensive report, and we strongly support the report's detailed findings and recommendations.”
The following organizations were sponsors of the report:
- American Cancer Society
- American College of Surgeons, Commission on Cancer
- American Society for Radiation Oncology
- American Society of Clinical Oncology
- American Society of Hematology
- California HealthCare Foundation
- Centers for Disease Control and Prevention
- National Cancer Institute
- National Coalition for Cancer Survivorship
- Oncology Nursing Society
- Susan G. Komen
The multidisciplinary committee that wrote the report included:
- Chair: Patricia Ganz, MD, UCLA Jonsson Comprehensive Cancer Center
- Harvey J. Cohen, MD, Duke University Medical Center
- Timothy J. Eberlein, MD, Washington University Medical Center
- Thomas W. Feeley, MD, University of Texas MD Anderson Cancer Center
- Betty J. Ferrell, FAAN, PhD, MA, FPCN, City of Hope National Medical Center
- James A. Hayman, MD, University of Michigan
- Katie B. Horton, George Washington University School of Public Health and Health Services
- Arti Hurria, MD, City of Hope National Medical Center
- Mary McCabe, RN, MA, Memorial Sloan-Kettering Cancer Center
- Mary D. Naylor, PhD, RN, FAAN, University of Pennsylvania School of Nursing
- Larissa Nekhlyudov, MD, Harvard Vanguard Medical Associates
- Michael N. Neuss, MD, Vanderbilt-Ingram Cancer Center
- Noma L. Roberson, PhD, Roswell Park Cancer Institute
- Ya-Chen Tina Shih, PhD, University of Chicago
- George Sledge, Jr., MD, Stanford University
- Thomas Smith, MD, Johns Hopkins Medicine
- Neil Wenger, MD, UCLA
- Provide patients and their families with understandable information about cancer prognosis, treatment benefits and harms, palliative care, psychosocial support, and costs.
- Provide patients with end-of-life care that meets their needs, values, and preferences.
- Ensure coordinated and comprehensive patient-centered care.
- Ensure that all individuals caring for cancer patients have appropriate core competencies.
- Expand the breadth of data collected in cancer research for older adults and patients with multiple comorbid conditions.
- Expand the depth of data collected in cancer research through a common set of data elements that capture patient-reported outcomes, relevant patient characteristics, and health behaviors.
- Develop a learning health care information technology system for cancer that enables real-time analysis of data from cancer patients in a variety of care settings.
- Develop a national quality reporting program for cancer care as part of a learning health care system.
- Implement a national strategy to reduce disparities in access to cancer care for underserved populations by leveraging community interventions.
- Improve the affordability of cancer care by leveraging existing efforts to reform payment and eliminate waste.