1
Introduction

We all want to believe that when people get cancer—including ourselves and our relatives—they will get health care of the highest quality. This report is about how closely we currently approach this ideal in the United States. Concerns about a growing lack of public confidence in the nation's system of care prompted the National Cancer Policy Board to undertake a comprehensive review of the evidence on the effectiveness of cancer services and delivery systems, the adequacy of quality assurance mechanisms, and barriers that impede access to cancer care. This report is the result of that review; it summarizes the state of knowledge about quality cancer care and makes recommendations about how to improve it.

The stakes are high. In 1999, more than 8 million Americans, or 3 percent of the population, will require some form of care because of a diagnosis of cancer: 1.2 million of these individuals will be newly diagnosed this year and initiate treatment; some, diagnosed in previous years, will continue treatment; others, who have been successfully treated and no longer have evidence of cancer, will require follow-up care; and over 500,000 people will die from cancer. Even larger numbers of adults in the United States will have been screened for cancer (ACS, 1999; Ries et al., 1997).

As exciting new scientific advances are making the news, there are concerns that what is already known to be effective for individuals with cancer is not reaching those who can benefit. This concern is not new; it was prominent among the reasons for the 1971 National Cancer Act (P.L. 92-218) and was expressed again as recently as 1994 in a report of the National Cancer Advisory Board (NCAB, 1994), Cancer at a Crossroads. At the same time, there is both uncertainty about the relative effectiveness of many interventions that are being used and a growing recognition that research efforts need to be expanded to identify standards of care (IOM, 1994). Complicating the picture is the rapid evolution of new health care delivery systems, whose impact on cancer care outcomes remains unclear.

Major shifts in the organization and financing of health care in the United States have precipitated a crisis in confidence. A growing number of Americans are uninsured, even more are



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--> 1 Introduction We all want to believe that when people get cancer—including ourselves and our relatives—they will get health care of the highest quality. This report is about how closely we currently approach this ideal in the United States. Concerns about a growing lack of public confidence in the nation's system of care prompted the National Cancer Policy Board to undertake a comprehensive review of the evidence on the effectiveness of cancer services and delivery systems, the adequacy of quality assurance mechanisms, and barriers that impede access to cancer care. This report is the result of that review; it summarizes the state of knowledge about quality cancer care and makes recommendations about how to improve it. The stakes are high. In 1999, more than 8 million Americans, or 3 percent of the population, will require some form of care because of a diagnosis of cancer: 1.2 million of these individuals will be newly diagnosed this year and initiate treatment; some, diagnosed in previous years, will continue treatment; others, who have been successfully treated and no longer have evidence of cancer, will require follow-up care; and over 500,000 people will die from cancer. Even larger numbers of adults in the United States will have been screened for cancer (ACS, 1999; Ries et al., 1997). As exciting new scientific advances are making the news, there are concerns that what is already known to be effective for individuals with cancer is not reaching those who can benefit. This concern is not new; it was prominent among the reasons for the 1971 National Cancer Act (P.L. 92-218) and was expressed again as recently as 1994 in a report of the National Cancer Advisory Board (NCAB, 1994), Cancer at a Crossroads. At the same time, there is both uncertainty about the relative effectiveness of many interventions that are being used and a growing recognition that research efforts need to be expanded to identify standards of care (IOM, 1994). Complicating the picture is the rapid evolution of new health care delivery systems, whose impact on cancer care outcomes remains unclear. Major shifts in the organization and financing of health care in the United States have precipitated a crisis in confidence. A growing number of Americans are uninsured, even more are

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--> underinsured, and many who are covered in health plans are worried that the system for delivering health care is more focused on cost than on quality. They wonder whether they will be referred appropriately to someone expert in cancer treatment and whether health professionals will be their advocates or the guardians of expenditures. The general concerns about health care are magnified among those with cancer because of the fearsome nature of the disease, the complexity of cancer management, the frequent reliance upon new and experimental interventions, and the high costs associated with cancer care. The experience of each individual with cancer is unique, affected by the type of cancer (there are more than 100) and the extent to which it has progressed. Each individual's experience is also influenced by socioeconomic status, insurance coverage, geographic location, and culturally based attitudes and beliefs. Finding the best cancer care and navigating through the complex care system can be difficult. Care spans screening, early detection, treatment, follow-up, palliative care, and sometimes end-of-life care. Numerous health professionals in hospitals, clinics, and private offices may all be involved. For certain individuals with cancer the best treatment option might only be available far from home at a specialized cancer center. Primary care physicians may guide patients through the initial stages of the diagnostic process. In some cases, entry into the cancer care system may be the result of public health screening rather than primary care. Once a diagnosis is made, charting a course for treatment may involve second or multiple opinions from cancer specialists, who might recommend different treatment options. Clinicians have agreed upon standard ways to treat some types of cancer, but for others, no evidence-based consensus exists. While adjusting to having cancer and the fear that it engenders, individuals frequently need to learn quickly about unfamiliar treatments and make difficult treatment choices. Some evidence suggests that quality falls short for many individuals with cancer. Various cancer control and treatment strategies of known effectiveness, such as regular screening for cervical cancer and mammography in women over 50, are underutilized (NCHS, 1997). In certain regions, radical or modified mastectomies are still performed for breast cancer, despite evidence that less invasive procedures are at least as effective in many situations (Fisher et al., 1985; Sarrazin et al., 1984; Veronesi et al., 1981). In some circumstances, most notably care in the latter phases of advanced cancer, providers fail to elicit, understand, and heed patient preferences (SUPPORT, 1995). Role of the National Cancer Policy Board The National Cancer Policy Board (NCPB) was established in March 1997 at the Institute of Medicine (IOM) and National Research Council to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. The 20-member board includes health care consumers, providers, and investigators in several disciplines (see membership roster). In its first report, Taking Action to Reduce Tobacco Use, the NCPB addressed the foremost known cause of cancer in the nation (NCPB, 1998). This second NCPB report, Ensuring Quality Cancer Care, describes important elements of the current cancer care "system," from early detection to end-of-life care, in the context of the rapidly changing health care environment;

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--> identifies major barriers that impede access to quality cancer care; defines quality cancer care and describes its measurement; provides examples of problems that limit early detection, accurate diagnosis, optimal treatment, and responsive supportive care; reviews and critiques systems of accountability that are in place to help ensure the receipt of quality cancer care; assesses whether ongoing cancer-related health services research is addressing outstanding questions about the quality of cancer care; and presents recommendations to enhance cancer care for consideration by Congress, public and private health care purchasers, health plans, individual consumers, health care providers, and researchers. The NCPB convened a public forum on March 31, 1997 and also listened to presentations by federal agency representatives at its quarterly meetings. Staff and Board members participated in a series of President's Cancer Panel meetings on quality issues in cancer care (PCP, 1998a-c). In addition, five background papers on cancer care quality issues were commissioned to support this report:* two reviews of the health services literature related to quality cancer care (Hillner and Smith, 1998; Schuster et al., 1998); a case study of model cancer care programs (Smith et al., 1998); an analysis of the state of clinical practice guidelines for cancer care (Smith et al., 1998); and a review of the literature on barriers to access to cancer care (Mandelblatt et al., 1998). Primary cancer prevention (i.e., preventing people from getting cancer in the first place), recognized as key to effectively curbing cancer, was viewed by the NCPB as outside the scope of this report. The Board believes strongly in the value of prevention, as witnessed by its first report on tobacco control, but prevention merits its own specific attention and fits better into other activities the Board anticipates undertaking in the future than into this report, which focuses on the system of medical care. Framework of the Report Chapter 2 describes the trajectory of cancer management, from early detection and treatment to end-of-life care, and the existing cancer care infrastructure. The chapter concludes with a summary of the effects on cancer care of recent changes in the organization, financing, and delivery of health care. Chapter 3 discusses barriers to access to cancer care. A new diagnosis of cancer in the absence of comprehensive health insurance coverage provides a case illustration of the difficulties of achieving access to care and the potentially devastating financial consequences of cancer. *   These papers are available on the NCPB website (www.nas.edu/cancerbd).

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--> Even in the absence of financial barriers, individuals may not receive quality care because of where they live, language or cultural barriers, and late adoption on the part of health care providers of effective interventions. Chapter 4 defines quality cancer care, describes the ways in which it can be measured, and documents important gaps in the quality of care for individuals with breast or prostate cancer, two cancers for which there have been quality assessments. Chapter 5 summarizes evidence on the ways in which three aspects of the health care delivery system can affect the quality of cancer care: (1) the volume of services provided either by institutions or by individual providers; (2) specialization in cancer care either by institutions or by individual providers; and (3) managed care. Chapter 6 reviews and critiques the means of monitoring quality and accountability that are in place. Chapter 7 surveys ongoing health services research that addresses cancer-related quality issues sponsored by selected federal agencies and private organizations. Chapter 8 summarizes the key findings and presents the Board's recommendations for action by Congress, health care purchasers, health plans, health care providers, individual consumers, and health services researchers. References American Cancer Society. 1999. Cancer Facts and Figures—1999. Atlanta, GA. Chassin MR, Gavin RW. 1998. The urgent need to improve health care quality. Institute of Medicine National Roundtable on Health Care Quality. Journal of the American Medical Association 280(11):1000-1005. Fisher B, Bauer M, Margolese R, et al. 1985. Five-year results of a randomized clinical trial comparing total mastectomy and segmental mastectomy with or without radiation in the treatment of breast cancer . New England Journal of Medicine 312:665-673. Hillner BE, Smith TJ. 1998. The quality of cancer care: Does the literature support the rhetoric? National Cancer Policy Board commissioned paper. IOM (Institute of Medicine). 1990. Medicare: A Strategy for Quality Assurance, KN Lohr, ed. Washington, D.C.: National Academy Press. IOM. 1994. America's Health in Transition: Protecting and Improving Quality. A Statement of the Council of the Institute of Medicine. Washington, D.C.: National Academy Press. Mandelblatt J, Yabroff KR, Kerner J. 1998. Access to quality cancer care: Evaluating and ensuring equitable services, quality of life and survival. National Cancer Policy Board commissioned paper. National Cancer Advisory Board. 1994. Cancer at a Crossroads.' A Report to Congress for the Nation. Bethesda, MD: National Cancer Institute. National Cancer Policy Board. 1998. Taking Action to Reduce Tobacco Use. Washington, D.C.: National Academy Press. National Center for Health Statistics. 1997. Healthy People 2000 Review. Hyattsville, MD: U.S. Department of Health and Human Services, Public Health Service. President's Cancer Panel. 1998a. Meeting on Quality of Care/Quality of Life. Los Angeles, California, April 23. President's Cancer Panel. 1998b. Meeting on Quality of Care/Quality of Life. New Haven, Connecticut, June 2.

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--> President's Cancer Panel. 1998c. Meeting on Quality of Care/Quality of Life. Buffalo, New York. October 6. Ries LAG, Kosary CL, Hankey BF, et al., eds. 1997. SEER Cancer Statistics Review, 1973-1994. NIH Pub. No. 97-2789. Bethesda, MD: National Cancer Institute, National Institutes of Health. Sarrazin D, Le M, Rouesse J, et al. 1984. Conservative treatment versus mastectomy in breast cancer tumors with macroscopic diameter of 20 millimeters or less: The experience of the Institut Gustave-Roussy. Cancer 53:1209-1213. Schuster MA, Reifel JL, McGuigan K. 1998. Assessment of the quality of cancer care: A review for the National Cancer Policy Board of the Institute of Medicine. National Cancer Policy Board commissioned paper. Smith TJ, Hillner BE. 1998. Ensuring quality cancer care: Clinical practice guidelines, critical pathways, and care maps. National Cancer Policy Board commissioned paper. Smith TJ, Desch CE, Hillner BE. 1998. Ensuring quality cancer care: Models of excellence. National Cancer Policy Board commissioned paper. SUPPORT Principal Investigators. 1995. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). Journal of the American Medical Association 274(20):1591-1598. Veronesi U, Saccozzi R, Del Vecchio M, et al. 1981. Comparing radical mastectomy with quandrantectomy, axillary dissection, and radiotherapy in patients with small cancers of the breast. New England Journal of Medicine 305:6-11.