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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;