Evidence of Access Problems

Individuals who are poor, have low educational attainment, or are members of racial or ethnic minority groups tend to have poorer cancer outcomes than members of other groups. This is supported by findings from the literature relating to different aspects of cancer care:

• Survival from cancer is associated with social class (characterized by income and education): lower social classes tend to have poorer survival (Gordon et al., 1992; Greenwald et al., 1996; Kogevinas and Porta, 1997; Savage et al., 1984).
• Overall cancer mortality is higher in the lower social classes, even after risk factors such as smoking are taken into account (Lantz et al., 1998).
• Death rates among African-American hospital patients with colorectal cancer are higher than rates for white patients, even when differences in patient characteristics, insurance status, clinical factors, and providers are accounted for (Ball and Elixhauser, 1996; Cooper et al., 1996).
• Hispanic cancer patients have lower colorectal survival rates than non-Hispanics (Goodwin et al., 1996).
• Five-year survival rates for Native American compared to white, non-Hispanic individuals, ascertained in 1978-1981, were substantially lower for colorectal cancer (37 versus 51 percent), lung and bronchial cancer (5 versus 12 percent), and female breast cancer (53 versus 75 percent) (Miller 1996).
• Individuals with cancer who are elderly, women, and members of racial/ethnic minority groups are more likely to have poor pain relief than others (Bernabei et al., 1998; Cleeland et al., 1994, 1997).

Review of the Literature, By Phase of Care

Phase 1: Early Detection

Early detection tests for breast, cervical, and colorectal cancers are effective in reducing mortality. For women age 50 to 69, for example, mammography screening reduces the death rate from breast cancer by about one-third (USDHHS, 1991). Although effective, these tests are underutilized, for example,

• 56 percent of women age 50 and older in 1994 had had a mammogram to detect breast cancer within the past 2 years,
• 77 percent of women age 18 and older in 1994 had had a Pap smear to detect cervical cancer within the past 3 years,
• 30 percent of people age 50 and older in 1992 had had a fecal occult blood test (FOBT) to detect colorectal cancer within the past 2 years, and
• 33 percent of people age 50 and older in 1992 had ever had a proctosigmoidoscopy to detect colorectal cancer (NCHS, 1997).

For those cancers for which effective screening tests exist, diagnosis at advanced stages among those eligible for screening suggests that tests are underused. Overall, 6 percent of breast cancers, 8 percent of cervical cancers, and 21 percent of colorectal cancers are diagnosed late (i.e., advanced) (Ries et al., 1997), but late stage at diagnosis is more common among some sociodemographic groups than others:

• People living in areas with high rates of poverty and unemployment are more likely to have their colorectal cancer diagnosed at a late stage than those living in other areas (Mandelblatt et al., 1996).
• Women living in poorer neighborhoods are more likely than women living in wealthier areas to have invasive, rather than localized, cervical cancer at diagnosis (Breen and Figueroa, 1996).
• African-American and other minority group members diagnosed with cancer are more likely to be diagnosed at advanced stages of disease than are whites (Farley and Flannery, 1989; Mandelblatt et al., 1991, 1996; Wells et al., 1992). For cervical cancer, this racial gap has increased over time despite greater use of Pap tests among African-American, compared to white women (Mitchell and McCormack, 1997).
• African-American and Hispanic women are more likely to have breast cancer diagnosed at late stages than white women, when setting of care, income, and education are controlled for (Mandelblatt et al., 1991).
• Women are more likely than men to have late-stage colorectal cancer at diagnosis (Mandelblatt et al., 1996).

Financial Barriers to Cancer Screening

Lack of health insurance is clearly linked to lower rates of cancer screening (Ayanian, 1993; Hedegaard et al., 1996; Katz and Hofer, 1994; Mickey et al., 1997) and to diagnosis at more advanced stages of disease (Figure 3.1). However, even in countries where health care coverage is universal, screening rates are not uniformly high. In Canada, for example, individuals with high compared to low household incomes are more likely to be screened for cancer (Katz and Hofer, 1994). Conversely, despite not having health insurance, 40 to 50 percent of uninsured women in the United States report that they have been screened for cervical and breast cancer (Hoffman, 1998).

Figure 3.1

Distribution of women with breast cancer by disease stage at time of diagnosis. Source: Hoffman, 1998.

Insurance policies vary in the extent of coverage they offer for cancer screening. People covered by plans with no or low levels of cost sharing are more likely to be screened for cancer than those in plans with higher out-of-pocket costs (Lurie et al., 1987). Among Medicare beneficiaries, those with private supplemental insurance are more likely to be screened for cancer than beneficiaries with Medicare supplemented by Medicaid or with Medicare alone (Blustein, 1995; Potosky et al., 1998). Cancer screening tests were a covered benefit for Medicare beneficiaries, but until 1998 a copayment was required for these tests.

Health Care Delivery and Cancer Screening

The way health care is delivered also affects the use of cancer screening tests. Individuals covered by managed care plans have higher rates of cancer screening than those covered by fee-for-service plans (Burack and Gimotty, 1997; Potosky et al., 1998). This is true also of Medicare beneficiaries in HMOs, whose cancer screening rates are the highest of the elderly population (Potosky et al., 1998).

Even for those with insurance, screening tests may be inaccessible because there are no facilities within a reasonable distance. Perhaps for this reason, residents of rural areas use cancer screening tests less often than their urban counterparts (Hayward et al., 1988b; Katz and Hofer, 1994). Some specific findings include the following:

• Women living in areas with no or few mammogram facilities are less likely to have mammograms than those living in areas with more facilities (Mandelblatt, 1995).
• Women living in areas with primary care shortages are less likely to have regular mammograms than women living elsewhere (Phillips et al, 1998).

Role of Patient Beliefs, Knowledge, and Racial Or Socioeconomic Characteristics in Screening

A lack of awareness of the benefits of cancer screening can pose as significant a barrier as lack of insurance or distance from screening facilities. Many individuals know little about cancer, and do not know that it can be successfully treated or when and why screening tests are useful (Grady et al., 1992; Myers et al., 1991). Low level of education (which usually occurs in conjunction with low household income) is associated with lower cancer screening (and re-screening) use (Lannin et al., 1998; Mickey, 1997; Rutledge et al., 1988).

Concerns about inconvenience, discomfort, trouble, embarrassment, fear of radiation, and pain involved in screening are among the reasons people forgo cancer screening tests (Davis et al., 1996; Glanz et al., 1996; Myers et al., 1991; Stein et al., 1990). Other attitudes—fatalism, a feeling that one's health cannot be affected by traditional medicine, and religious or cultural beliefs—may also preclude cancer screening (Kagawa-Singer, 1997; Lannin et al., 1998; Mo, 1992).

In one breast cancer study, culturally based attitudes and beliefs were more predictive of advanced stage at diagnosis (suggesting low screening rates) than were social class and race (Lannin et al., 1998). In this study, African-American women had three times the odds of white women (i.e., an "odds ratio" of 3) of being diagnosed with late-stage disease (Stages III and IV). When social class was taken into account in the analysis, the odds ratio decreased to 1.8. When measures of cultural beliefs (e.g., the devil can cause you to get cancer, air causes cancer) were also controlled for in the analysis, African-American women no longer had increased odds of late-stage disease.

Use of mammography appears to account for much of the variation of stage at diagnosis of breast cancer that can be attributed to race (Breen and Figueroa, 1996; Mandelblatt et al., 1995). Studies have found the following:

• There were no differences in stage at diagnosis among women who were regular mammography users according to comparisons of mammography histories of elderly African-American and white women. However, among women who had not participated in screening mammography, the odds of being diagnosed with late-stage breast cancer were 2.5 times greater for African-American than for white women (McCarthy et al., 1998).
• Women who receive medical care through the Department of Defense, and who should therefore all have the same access to care, demonstrate no difference in stage among Caucasian, African-American, and Hispanic women diagnosed with breast cancer (Zaloznik, 1995, 1997).
• Among elderly women, African-Americans as compared to whites use mammography less often. More frequent use of mammography is associated with more visits to a primary care physician in both groups, but the deficit for African-American women persists at each income level, even after primary care use is considered. Primary care visits are less likely to "boost" mammography use for African-American women than for white women (Burns et al., 1996).

Some evidence suggests that certain racial and ethnic groups that appear to have adequate access to care are not getting appropriate screening services. In one study, women living in Appalachia and Hispanic women living in urban Texas had relatively low cancer screening rates despite having access to care (NCI, 1995b). Hispanics and some Asian groups (e.g., Chinese, Vietnamese) tend to have lower screening rates than whites or African Americans, which may be attributable, at least in part, to language and cultural barriers on the part of patients and providers (Hiatt and Pasik, 1996). Studies have found that

• physicians discussed mammography less often with Hispanic than with non-Hispanic patients (Fox and Stein, 1991),
• African-American women enrolled in managed care plans were less likely than white women to have had a doctor advise them to get a mammogram. Nevertheless, African-American and white women had similar self-report mammography use (Glanz et al., 1996); and
• African-American patients were less likely to report receiving advice about cancer screening or receiving screening tests than white patients seeing the same physicians (Gemson et al., 1988).

The older people are, the less likely they are to be screened for breast and cervical cancers (Fox et al., 1994; Hedegaard et al., 1996; NCHS, 1997; NCI, 1995). The elderly may hold beliefs that inhibit testing, but they are likely to comply with physicians' recommendations to be screened (Fox et al., 1994; Mandelblatt et al., 1991). Some physicians may also mistakenly believe that routine cancer screening is unimportant in elderly patients (Weisman et al., 1989).

Many people who are screened for cancer once do not have the tests repeated at recommended intervals. Rates of adherence to regular or ''interval" screening are significantly lower than for the initial screening procedure (Burack and Gimotty, 1997; De Waard et al., 1984). Adherence to lifetime cancer screening is measured as the number of cancer screens received per number recommended. For example, if five screens were recommended for a 55-year-old woman and she had received only four of the five, she would be considered 80 percent adherent. The effect of age on adherence to interval screening appears to vary by cancer type, with higher screening rates observed for the elderly with colorectal cancer (Brown et al., 1990; Mandelblatt et al., 1996), but lower rates for cervical cancer (De Waard et al., 1984; Fink et al., 1972; Mandelblatt et al., 1998). One study indicates that adherence to lifetime breast cancer screening is higher among women who are younger, are members of a higher social class, and have access to care, especially membership in an HMO (the study compared women of similar age, race, education, and income) (Philips et al., 1998).

Role of the Physician in Cancer Screening Access

With or without insurance, lacking a regular source of care also leads to lower rates of cancer screening (Bindman et al., 1996; Fox et al., 1994; Gordon et al., 1998; Zapka, 1994; Zapka et al., 1992). In one study, women who did not have a regular doctor were 3.5 times more likely to be diagnosed with late-stage breast cancer than women who had seen their regular doctor within the past year (Lannin et al., 1998). In a study of multiethnic black and Hispanic women in New York, breast and cervical cancer screening rates increased when women had a usual source of care and when they had a regular clinician at their usual source (O'Malley et al., 1997). One of the strongest predictors of whether a person will be screened for cancer is whether the physician recommends testing (Fox and Stein, 1991; Grady et al., 1992; Mickey et al., 1997; Zapka et al., 1991). Overall, physicians order fewer cancer screening tests than are recommended in preventive health care guidelines (Fox et al., 1988; Schwartz et al., 1991). Some researchers have looked into the reasons physicians may not recommend screening tests and have found the following:

• Physicians are generally aware of guidelines, but they may not perceive screening tests to be beneficial in the absence of symptoms (Schapira et al., 1993).
• Screening recommendations change, and some providers may not keep up with current standards, whereas others may be confused by conflicting guidelines.
• Many individuals seek health care only when they have an acute illness and providers may miss opportunities to provide screening if they focus only on the presenting illness.
• A lack of reimbursement for counseling about screening, time pressures, and health system infrastructure limitations (e.g., a lack of tracking or reminder systems) may also contribute to providers' underuse of cancer screening tests.

Screening practices also vary by physician specialty. Obstetrician-gynecologists are more likely than family practitioners to order cancer screening tests for women. Internists generally recommend screening at lower rates than other primary care providers, and subspecialists providing primary care tend to screen at the same, or lower rates than primary care providers (Albanes et al., 1988; Bassett, 1985; Bergner et al., 1990; Mann et al., 1987; Schwartz et al., 1991; Weinberger et al., 1991; Weisman et al., 1989; Zapka et al., 1992). Some studies suggest that women cared for by female physicians are more likely to be screened for cancer than women cared for by male physicians (Lurie et al., 1997).

The manner in which screening is presented by health care providers can affect whether a person actually has the test. A higher level of enthusiasm for the recommendation can influence the likelihood of screening (Mickey et al., 1997). Women who say that they participated in the initial decision to be screened for breast cancer were also more likely to adhere to the recommended follow-up mammography regimen than those who felt the doctor had made the decision for them (Phillips et al., 1998).

Interventions to Improve Screening Rates

A number of interventions have been demonstrated to increase cancer screening rates. Telephone and mailed reminders from providers, multimedia educational interventions, financial incentives, and peer counseling can all increase women's use of mammography (Clementz et al., 1990; Davis et al., 1997; Irwig et al., 1990; Janz et al., 1997; Kendall, 1993; Kiefe et al., 1994; King et al., 1994; Landis et al., 1992; Lantz et al., 1995; Mickey et al., 1997; Mohler, 1995; Taplin et al., 1994). Among women already screened for cancer, reminders to return for screening increase interval testing (Mayer et al., 1994; Schapira et al., 1992). Providing general information about cancer screening alone to those who are eligible, however, has not been effective in increasing test use (Champion, 1994b; Nattinger et al., 1989; Skinner et al., 1994).

Interventions aimed at providers can also improve screening use. Physician reminder systems, chart audit with feedback, and physician education about appropriate screening practices contribute to higher screening test use (Becker et al., 1989; Burack et al., 1997; Chambers et al., 1989; Cheney and Ramsdell, 1987; Cowan et al., 1992; Landis et al., 1992; McPhee et al., 1989, 1991; Nattinger et al., 1989; Ornstein et al., 1991; Tierney et al., 1986; Yarnall et al., 1993). However, in one study, written feedback and financial incentives were ineffective in improving physician compliance to cancer screening guidelines in primary care sites serving women age 50 and older cared for in a Medicaid HMO (Hillman et al., 1998).

Phase 5: End-Of-Life Care

Care at the end of life for patients dying from cancer may include heroic attempts at cure, pain management, treatment for psychological problems, or combinations of these. Caregivers may be the same as those involved in earlier phases of treatment but are likely to include others, among them, hospice caregivers from various disciplines. For most patients, palliation eventually becomes the focus of care. Barriers to the best end-of-life care may stem from financial constraints, and from provider and patient attitudes and knowledge.

Financial Factors

The uninsured and inadequately insured may not be able to afford important components of end-of-life care (e.g., pain medication, nutritional supplements, outpatient nursing services) (Underwood, 1995). Even among the well insured, the costs of end-of-life care can contribute to financial hardship. In one study, more than half of the families involved in the care of a seriously ill family member reported at least one severe burden ranging from loss of family savings, or loss of income, to changes in future educational plans or employment status (Covinsky et al., 1994). One commonly cited financial burden relates to Medicare reimbursement policy. Medicare will reimburse for pain management at an inpatient facility, but not for outpatient oral analgesics. This is a major barrier to adequate pain management for terminal cancer patients who choose to die at home.

An additional barrier to end-of-life care is the absence of a primary care provider. The poor and uninsured may be less likely to have a regular clinician with whom they are comfortable discussing end-of-life care issues.

Patient Factors

Patients dying of cancer often suffer avoidable pain and distress (Cleeland et al., 1994; Passik et al., 1998). Certain patient attitudes or beliefs can act as barriers to good end-of-life care. Stoicism can lead to underreporting of pain, nausea, or depression; concerns about becoming addicted to pain medication or a belief in the inevitability of pain with cancer can contribute to the underuse of pain medication (Ward et al., 1993). Some patients are reluctant to communicate symptoms to their providers for fear of diverting attention from the pursuit of a cure (Ward et al., 1993). Some evidence suggests that these attitudinal barriers may be more prevalent among certain sociodemographic groups (e.g., those with low educational attainment) and certain racial or ethnic minority groups (Cleeland et al., 1997; Rimer et al., 1987; Ward et al., 1993).

Provider Factors

Aside from financial barriers, most impediments to adequate end-of-life care are associated with health care providers. For example, although there are effective pharmacological strategies to manage pain, providers consistently undertreat pain (Levin et al., 1998; Levy, 1996; McCaffery and Ferrell, 1995). In one study, 42 percent of patients with recurrent or metastatic cancer were inadequately managed for their pain (Cleeland et al., 1994). The elderly, women, and members of racial or ethnic minority groups are more likely than others to have poor pain relief (Bernabei et al., 1998; Cleeland et al., 1994, 1997). Physicians report concerns about management of side effects, patient tolerance of analgesia, and regulatory scrutiny when prescribing narcotics as barriers to effective pain management (Van Roenn et al., 1993). Simple measures, such as attaching a patient-completed pain assessment sheet to the front of the medical chart, can increase effective pain management (Trowbridge et al., 1997).

Physicians also do not adequately identify signs of depression among patients with cancer. In one study, only 13 percent of patients with evidence of moderate to severe depression were identified by their physicians (Passik et al., 1998). Providers may not have clear guidance on how to manage terminal cancer care. Guidelines are available to assist in the management of cancer-associated pain (e.g., from the Agency for Health Care Policy and Research), but there are no standards of care for other common symptoms of cancer such as anxiety, anorexia, or the wasting often associated with cancer.

Communication among various members of the end-of-life care team and with patients may be less than optimal. In one study of terminally ill patients, communication between physicians and patients was poor—only 41 percent of patients in the study reported talking to their physician about prognosis or about their wishes regarding resuscitation (SUPPORT, 1995; Lo, 1995). Physicians infrequently discuss advance directives, and when these are discussed, there is considerable disagreement on the outcome of such discussions. Patients' requests for end-of-life care (e.g., withholding of CPR) are frequently not documented in the medical chart (Haidet et al., 1998; SUPPORT, 1995).

A recent study reports that the vast majority of people with terminal cancer overestimate their chances of surviving their illness (Smith et al., 1998; Weeks et al., 1998). Those who thought they were going to live for six months were more than two times as likely to choose aggressive anticancer therapy instead of palliative or hospice care, which is designed to relieve symptoms. The overoptimistic patients did indeed live longer than those who had more realistic expectations. Patients who overestimated their survival and received aggressive therapy, however, had exactly the same median survival as those who received palliative care and were more likely to have a hospital readmission, undergo attempted resuscitation, or die while receiving ventilatory support. Some patients choose aggressive chemotherapy, even when there is little chance of benefit (Slevin et al., 1990). To achieve the goals of supporting patient values and minimizing the prospect of utilizing therapies that will not increase survival, physicians must make sure that patients understand their prognosis by initiating a dialogue, asking what patients want to know, providing estimates of survival duration, explaining the poor efficacy and debilitating side effects of therapy common at this stage, and discussing all treatment options, including palliative care alone (Smith et al., 1998).

About half of cancer patient deaths involve hospice care. ''Hospice" is a philosophy of care that emphasizes the coordinated delivery of many services for terminally ill patients and their families including: nursing care; physician services; homemakers and home health aides; physical, occupational, and speech therapy; and psychological counseling and social services. Medicare provides a hospice benefit that has criteria for patient admissions and use of therapies. Eligibility for hospice services under Medicare requires an expected survival of less than six months, but most hospice patients live for less than two months following their admission. Physicians appear to delay referring patients for hospice care, in part because it is difficult to predict accurately the expected survival of the terminally ill. Delays in referral may also be due to a physician's lack of knowledge of hospice services, poor communication with the palliative care team, or reluctance to engage in uncomfortable discussions or feelings about end-of-life care (Christakis and Escarce, 1996). Hospice benefits for non-Medicare patients are variable and Medicaid coverage of hospice care varies from state to state.

The National Cancer Policy Board sought additional information about barriers to effective end-of-life care for cancer patients by commissioning interviews with 19 expert physicians, nurses, social workers, and health services researchers. The findings are summarized in the paper, Issues in End of Life Care for People with Cancer: Interviews with Selected Providers and Researchers (Gelband et al., 1999). This approach was taken to complement the 1997 report, Approaching Death: Improving Care at the End of Life, completed by IOM's Committee on Care at the End of Life (IOM, 1997). The 1997 report is a thorough review of end-of-life issues, ending with a series of recommendations that were accepted by the NCPB for cancer patients (Box 3.1). For more detail and context, the reader is referred to the complete IOM report.

BOX 3.1

"Recommendations and Future Directions" from Approaching Death: Improving Care at the End of Life. People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care. (more...)

A recent review examined outcome measures that have been used, or proposed for use in the clinical audit of palliative care of patients with advanced cancer. Identified measures met some, but not all of the objectives of measurement in palliative care, and fulfilled some, but not all of the criteria established for validity, reliability, responsiveness, and appropriateness (Hearn et al., 1997).

Key Findings

A persistent, vexing problem for many Americans is lack of health insurance or insufficient coverage to help defray the expense of a costly illness such as cancer. Although most individuals diagnosed with cancer are elderly and have Medicare coverage, an estimated 7 percent of those facing a new diagnosis of cancer lack health insurance. Health insurance offers some, but often incomplete, protection against the high costs of cancer care. High deductibles, copayments or coinsurance, and limits on coverage can all contribute to high out-of-pocket costs. Medicare was, for example, estimated to cover only 83 percent of typical total charges for lung cancer and 65 percent of typical charges for breast cancer in 1986. Some individuals have additional protection through other insurers (e.g., Medigap policies, Medicaid), but even then, the financial burden of cancer can be substantial. A particular problem for many with cancer involves limitations on prescription drug coverage, an expensive and widely used benefit.

Individuals who are poor, have low educational attainment, or are members of racial or ethnic minority groups tend to have less favorable outcomes with cancer than other groups. Limited access to primary care or cancer screening contributes to having cancer diagnosed at later stages when the prognosis is worse. Having health insurance coverage improves access, but does not guarantee that cancer screening tests are used. Other factors that can impede access to screening are culturally based attitudes and beliefs, not having services available in the local community, and health care providers not able to speak the language of the people they serve.

It is often health care providers who can be held accountable for the underuse of cancer screening tests. One of the strongest predictors of whether a person will be screened for cancer is whether the physician recommends testing, and evidence suggests that physicians order fewer screening tests than they should. The use of screening tests is improved in managed care plans, compared to fee-for-service plans.

Even when screening is used, many individuals fail to receive timely, or any, follow-up of abnormal screening results. Both screening and follow-up rates can be improved with interventions aimed at those eligible for screening (e.g., telephone and mailed reminders from providers, educational interventions) and health care providers (e.g., reminder systems).

Differences in treatment by race have been well documented. However, it appears that the effect may actually be related more closely to social class than to race. Another group that appears to be vulnerable in the cancer care system is the elderly. Older people are often less likely to get effective cancer treatments than are younger people, despite evidence that the elderly can tolerate and benefit from them. Some undertreatment is explained by provider attitudes toward treating the elderly, who are perceived as less willing or able to tolerate aggressive treatment.

There is evidence of widespread quality problems in end-of-life care, especially in the area of pain management. The elderly, women, and members of racial or ethnic minority groups are more likely than others to have poor pain relief, which appears to be due to a combination of factors: poor palliative care practices on the part of providers, attitudes of patients (e.g., stoicism), and miscommunication between patients and health care providers.

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Footnotes

1

Bristol-Myers Squibb Company, for example, provides financial assistance to pay for the near 25 chemotherapy drugs that it makes. One of its products, Vepesid, (etoposide, oral), could cost an uninsured (or underinsured) cancer patient more than $1,000 per month. This program approved more than 5,000 applications from January through September 1998 (individuals must reapply for assistance every six months) (Betsey Grasser, personal communication to Elizabeth Kidd, October 1998). The Bristol-Myers Squibb program and those of other pharmaceutical companies have stringent eligibility requirements based on income and insurance status.

2

Available Medigap policies, for example, vary in their coverage of outpatient prescriptions. For some plans, the patient pays 50 percent per prescription. Others have an annual deductible (e.g., $250) and then cover up to $1,250 or $3,000 of the cost of prescription drugs.