3
Ensuring Access to Cancer Care

The link between poor access to care and poor health outcomes is well established (Hoffman, 1998; IOM, 1994), but the reasons for inadequate access are not well understood. Some of the connections are intuitive and obvious: women without health insurance have breast cancer detected at later stages and have poorer survival rates than women with insurance (Ayanian et al., 1993). One in seven Americans lacks health insurance, which creates a general barrier to getting medical care of any kind. Some other barriers to receiving appropriate medical care are less obvious. Nonfinancial barriers that may prevent people from ''getting to the door" of a health care provider include geography, language, fear and distrust of health care providers, and difficulties getting through appointment or "gatekeeper" systems. Once "in the door," other barriers to access may surface when attempting to navigate the system: for example, getting from a primary care provider to a specialist. Within the system, providers may lack current information on treatment, have difficulty communicating with patients, or have insufficient staff to coordinate care and provide all the services patients need. The cancer care system is complex; consequently, various barriers that serve to limit access may surface during each phase of care.

Access, as defined by the Institute of Medicine (IOM, 1994), is the timely use of personal health services to achieve the best possible health outcomes. This definition of access incorporates both the use of health services and the quality of such services to assess the degree of access that has been achieved. The test of equity of access involves first determining whether there are systematic differences in use and outcomes among groups in U.S. society and, if there are, the reasons for these differences (IOM, 1994).

This report brings together the best evidence from the published literature about the barriers to health care for cancer patients and the roots of these barriers. The body of available literature clearly documents differences in access to particular phases of care for particular cancers, at specific points in time and place. In no case, however, does it provide an overall picture of access to cancer care across society in the late 1990s, and in some cases conflicting evidence is pre-



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--> 3 Ensuring Access to Cancer Care The link between poor access to care and poor health outcomes is well established (Hoffman, 1998; IOM, 1994), but the reasons for inadequate access are not well understood. Some of the connections are intuitive and obvious: women without health insurance have breast cancer detected at later stages and have poorer survival rates than women with insurance (Ayanian et al., 1993). One in seven Americans lacks health insurance, which creates a general barrier to getting medical care of any kind. Some other barriers to receiving appropriate medical care are less obvious. Nonfinancial barriers that may prevent people from ''getting to the door" of a health care provider include geography, language, fear and distrust of health care providers, and difficulties getting through appointment or "gatekeeper" systems. Once "in the door," other barriers to access may surface when attempting to navigate the system: for example, getting from a primary care provider to a specialist. Within the system, providers may lack current information on treatment, have difficulty communicating with patients, or have insufficient staff to coordinate care and provide all the services patients need. The cancer care system is complex; consequently, various barriers that serve to limit access may surface during each phase of care. Access, as defined by the Institute of Medicine (IOM, 1994), is the timely use of personal health services to achieve the best possible health outcomes. This definition of access incorporates both the use of health services and the quality of such services to assess the degree of access that has been achieved. The test of equity of access involves first determining whether there are systematic differences in use and outcomes among groups in U.S. society and, if there are, the reasons for these differences (IOM, 1994). This report brings together the best evidence from the published literature about the barriers to health care for cancer patients and the roots of these barriers. The body of available literature clearly documents differences in access to particular phases of care for particular cancers, at specific points in time and place. In no case, however, does it provide an overall picture of access to cancer care across society in the late 1990s, and in some cases conflicting evidence is pre-

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--> sented on the same topic. Some discrepancies may be due to different research methods, but many of them probably reflect the actual situation—that access has varied across time and place and that the variation has multidimensional causes and effects. Nonetheless, the material presented here is a useful guide to general patterns of differential access and to some of the interventions that have been successful in improving access. 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). Why Do These Differences Exist? Some of the factors that have been investigated as possibly affecting access to optimal cancer care are health insurance coverage and type of coverage; cost, including health insurance and out-of-pocket costs; attributes of the health care delivery system (e.g., geographic distribution of cancer care facilities, lack of service coordination); attributes of individuals (e.g., lack of knowledge or misperceptions about cancer prevention and treatment, linguistic or cultural attributes); and attributes of health care providers (e.g., lack of knowledge about cancer prevention and treatment, communication styles).

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--> These factors and others may come into play in different ways at one or more of the steps along the path from cancer detection and treatment to care at the end of life, and all can potentially contribute to differences in outcomes. In this chapter, the role of financial barriers in the context of cancer care is reviewed, in particular, problems related to health insurance coverage and out-of-pocket costs. Then the literature exploring the sources of the mortality differentials among sociodemographic groups is summarized by the following phases of care (For a more in-depth review of this literature and a conceptual framework regarding issues of access to cancer care, see the NCPB commissioned paper by Mandelblatt and colleagues [Mandelblatt et al., 1998, available on line at: www.nas.edu/cancerbd], upon which this review is based): Phase 1: Early detection, Phase 2: Evaluation of abnormal screening results, Phase 3: Cancer treatment, Phase 4: Posttreatment surveillance and recurrence care, and Phase 5: End-of-life care. Financial Barriers To Access To Cancer Care Health Insurance and Type of Coverage Individuals with cancer are very likely to be insured, because the large majority is over age 65 and covered by Medicare. Nevertheless, of the 1.3 million new cases of cancer diagnosed in 1997, an estimated 86,000 individuals, or 7 percent, would be expected to be uninsured (estimate based on age-specific cancer incidence rates and the age distribution of the uninsured). Nationally, 16 percent of the population was uninsured in 1997 (U.S. Bureau of the Census, 1998). In addition, many individuals with health insurance experience lapses in coverage (an estimated 12 million in 1992). The diagnosis of cancer can, in itself, lead to a loss of health insurance coverage or to higher insurance premiums. In 1992, 7 percent of cancer survivors who were insured prior to their diagnosis reported that their health insurance changed following their cancer diagnosis (e.g., 5 percent said that their insurance costs increased) (Hewitt, 1998). Congress tried to remedy this problem in 1996, enacting the Health Insurance Portability and Accountability Act (Kennedy-Kassebaum Act) to improve the portability and continuity of health insurance coverage in private insurance markets and among employer-sponsored group health plans. The act limits the ability of insurers to deny or discontinue coverage because of preexisting conditions such as cancer. The increased cost of premiums for portable insurance products and difficulties in implementing the law, however, have limited the value of these new protections for consumers (U.S. General Accounting Office, 1997). If individuals are uninsured, medical expenses related to cancer may force them to "spend down" to become eligible for Medicaid—that is, to deplete their assets until they meet eligibility criteria. Alternatively, individuals who are disabled by cancer for a period of two years may become eligible for Medicaid coverage through the Supplemental Security Income (SSI) program. Some hospitals are obligated to provide some charity care to the uninsured (i.e., under the Hill-

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--> Burton Act of 1946); some state and federal programs provide free cancer screening and sometimes treatment for the uninsured (e.g., the Centers for Disease Control and Prevention [CDC] National Breast and Cervical Cancer Early Detection Program; the Maryland state program that pays for treatment for uninsured women with breast cancer); at least 50 pharmaceutical companies have patient assistance programs to help defray the costs of expensive chemotherapy drugs for those who are poor and uninsured (or underinsured);1 and some charitable organizations provide free services or financial assistance to individuals with cancer. These programs and services cannot substitute for adequate insurance coverage for cancer treatment, but they can ease the financial burden for those who receive them. The American Cancer Society has a volunteer-based program called Road to Recovery that provides transportation for cancer patients to and from medical appointments and treatments (Anne Marie Oria, Texas American Cancer Society, personal communication to Elizabeth Kidd, October 1998). Cancer Care, a nonprofit, voluntary agency serving primarily the New York City area provides, on a limited basis, financial assistance for treatment-related expenses (e.g., transportation, child care, home care, pain medication) (Sherry Fremont, personal communication to Elizabeth Kidd, October 1998). St. Jude Children's Research Hospital provides free medical care, transportation, and other supportive services for children with cancer and other conditions (Jerry Chipman, personal communication to Elizabeth Kidd, September 1998). The Organ Transplant Fund provides health care support services, financial assistance, and advocacy programs to transplant candidates and their families (Organ Transplant Fund, 1998). At least 27 states sell comprehensive health insurance to state residents with serious medical conditions who cannot find a company to insure them or who cannot afford the high cost of coverage. The insurance provided through these so-called state risk pools (also known as Guaranteed Access Programs) generally costs more than regular insurance, and in some states, there are waiting periods for coverage of preexisting conditions and lifetime caps on benefits (e.g., sometimes as low as $250,000) (Matt Hayes, Patient Advocate Foundation, personal communication to Elizabeth Kidd, September 1998). 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.

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--> Cost, Including Health Insurance and Out-of-Pocket Costs Health insurance coverage may not adequately protect individuals from the high costs associated with cancer treatment. Some policies have high deductibles (e.g., catastrophic policies typically contain a deductible of $15,000 or more), and copayments or coinsurance over the course of cancer treatment can be substantial (HIAA, 1998). Furthermore, many insurers, including Medicare, do not cover all of the drugs and treatments used by cancer patients (see discussion of prescription drug coverage below). Relatively few studies specific to cancer exist regarding the magnitude of the financial burden associated with out-of-pocket costs, but available evidence suggests that it is substantial. In a study conducted in 1986, Medicare was found to cover an estimated 83 percent of typical total charges for lung cancer and 65 percent of typical charges for breast cancer (Sofaer et al., 1990). For these two cancers, investigators assessed the extent to which supplemental Medigap plans reduced out-of-pocket costs and found that plans varied widely in the financial protection offered. Out-of-pocket expenses ranged from less than $100 under some health maintenance organization (HMO) plans to nearly $4,000 under some private Medigap plans (1986 dollars) (Sofaer et al., 1990). Unlike the great majority of employer-provided insurance plans, Medicare does not cap beneficiaries' total payments for cost sharing (AARP, 1997). Medicare HMOs typically have lower cost sharing than the traditional Medicare program and may offer additional benefits, such as outpatient prescription drug coverage (AARP, 1997). Prescription Drug Coverage. Insurance policies often lack comprehensive coverage for prescription drugs, a benefit needed by most individuals with cancer. Medicare, for example, does not cover the costs of most outpatient prescription drugs, which can include pain medications and other drugs to treat the effects of cancer and its treatment. Many Medicare beneficiaries are subject to these costs because only one-third of them have insurance policies that cover prescription drugs (e.g., Medicaid, employer-provided, or privately purchased policies) (Gluck, 1999). Most chemotherapy is administered in outpatient settings and is covered by Medicare. Even when insurance does offer prescription drug coverage, out-of-pocket expenses can be high because of limits to coverage.2 An estimated 7 percent of the elderly with chronic illnesses spend at least 10 percent of their household income on prescription drugs (Rogowski et al., 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, 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.

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--> 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).

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--> 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).

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--> 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).

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--> 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,

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--> 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).

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--> 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 2: Evaluation of Abnormal Screening Results Follow-Up of Abnormal Results Screening tests alone do not provide a diagnosis of cancer; this can be made only with further testing. In fact, most people with abnormal results from a single cancer screening test will not be found to have cancer, so definitive testing is essential if the benefits of screening are to be realized (Mandelblatt et al., 1997). Nonetheless, many individuals fail to receive timely, or any, follow-up of an abnormal screening test, with large variations in the rates of nonresolution across settings and populations. Different studies have reported that 20-99 percent of women who have abnormal mammograms receive appropriate diagnostic follow-up (Kerlikewske, 1996; Manelblatt et al., 1993b), and 20-74 percent of women with abnormal Pap smears receive appropriate follow-up (Lacey et al., 1993; Marcus et al., 1992; Mandelblatt et al., 1997; Michielutte et al., 1985). In one study of the reasons for delays between the time of the initial medical consultation and the establishment of a diagnosis among women with breast cancer, providers and the health care systems were found to be responsible for 45 percent of cases with significant delays. Delays were attributed to difficulties in scheduling or physician inaction. In about 25 percent of the cases, the delay was attributed to patients, and the most common reason for inaction provided by women was that the problem was not perceived as important. In another 17 percent of cases, both the patient and system were determined to be responsible. For the balance of cases, no reason for the delay was ascertained (Caplan et al., 1996). Several patient characteristics are associated with inadequate follow-up of abnormal cancer screening results: rural residence (Fox et al., 1997), relatively less education (Michielutte et al., 1985), low income (McCarthy et al., 1996a), and being a member of a racial or ethnic minority group (Chang et al., 1996; Kerlikowske, 1996; Mandelblatt et al., 1996; Rojas et al., 1996), but these factors are not all independent predictors of follow-up. Some of the observed racial differences may, in part, be attributable to socioeconomic status, age, marital status, and history of previous mammogram. For instance, when these factors were controlled for in an analysis of the effect of race on screening follow-up, the effect of race diminished substantially (McCarthy et al., 1996a). It is unclear whether certain patients fail to heed advice about follow-up; whether personal characteristics predict the likelihood that a physician will make follow-up recommendations; whether certain institutions lack tracking systems; or whether certain patients have difficulties navigating the system.

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