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7 Barriers to Appropriate Use of Psychosocial Services A lthough there is a general consensus that psychosocial services are needed and valuable, less is known about why services are not widely offered or used. Individuals may face barriers to receipt of psychosocial services because they do not have access to care, because they lack either health insurance or coverage that includes mental health services, or because they do not ask for help because of stigma. Among the barriers imposed by providers and systems of care are: patientâprovider miscommu- nication, failure to implement clinical practice guidelines, inexperience with assessment for psychosocial distress and rapid screening tools, poor coordi- nation and fragmentation of complex care, a lack of provider familiarity with community resources, and limited systems of quality assurance and accountability. This chapter reviews available evidence regarding these barriers to receipt of appropriate psychosocial care. ACCESS TO CARE The link between poor access to care and poor health outcomes is well established (IOM, 2001, 2002), 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; Lee-Feldstein et al., 2000; Roetzheim et al., 2000, 1999). People who lack health insurance are also less likely to receive mental health services (Landerman et al., 1994). 165
166 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER One in seven adult women in the United States lacks health insurance, which creates a general barrier to getting medical care of any kind (U.S. Census Bureau, 2002). Some other barriers to receiving appropriate care are less obvious. Non-financial barriers that may prevent people from âget- ting to the doorâ of a health-care provider include geography (travel dis- tance), language, fear and distrust of health care providers, and difficulties getting through appointment or âgatekeeperâ systems. Once âin the door,â other barriers to access may surface when attempting to navigate the sys- tem: for example, getting from a primary care provider to a specialist. This is especially problematic for referral to mental health and psychosocial ser- vices. Within the system, providers may lack information about the diagno- sis and management of distress, have difficulty communicating with pa- tients or understanding their problems due to cultural differences, or have insufficient staff to adequately explore patientsâ psychosocial needs and pro- vide referral to needed services. The cancer care system is complex, and for breast cancer, it may involve the surgeon, radiologist, and oncologist at different times (see Chapter 5 for a description of breast cancer care). Con- sequently, various barriers that serve to limit access may surface during each phase of care. These barriers to optimal care are themselves a potential source of psychosocial distress for many women (Hinestrosa, workshop presentation, 2002). Access, as defined by the Institute of Medicine (IOM, 1993), is the timely use of personal health services leading to the best possible health outcomes. This definition of access implies the use of health services, the quality of such services, and the degree to which access has been achieved. The test of equity of access involves first determining whether there are systematic differences in use and outcomes among groups in United States society and, if there are, the reasons for these differences (IOM, 1993). Some of the factors that have been investigated as possibly affecting access to mental health services include: â¢ Health insurance coverage and type of coverage; â¢ Cost, including health insurance and out-of-pocket costs; â¢ Attributes of the health care delivery system (e.g., geographic distri- bution of cancer care facilities, lack of service coordination; separation of medical and behavioral (mental) health in different and unrelated contracts); â¢ Attributes of individuals (lack of knowledge or misperceptions about mental health services; linguistic or cultural attributes); and â¢ Attributes of health-care providers (e.g., lack of knowledge about mental health resources; communication styles). This section of the report describes these barriers in the context of ac- cess to mental health services among women with breast cancer.
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 167 Health Insurance Coverage and Type of Coverage Women with breast cancer are more likely than other women to be insured, because as many as 45 percent of newly diagnosed cases occur among women age 65 and older who generally are covered by Medicare (in 2001, an estimated 46 percent of incident cases and 59 percent of women dying of cancer were covered by Medicare). Nevertheless, of the 203,500 women diagnosed with invasive breast cancer in 2002, an estimated 16,350 women, or 8.0 percent of women with breast cancer and 6.1 percent of women who died of cancer, would have been expected to be uninsured (Table 7-1). Nationally, 14 percent of adult women were uninsured in 2001 (U.S. Census Bureau, 2002). 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 sur- vivors who were insured prior to their diagnosis reported that their health TABLE 7-1 Estimates of Health Insurance Coverage Among Women with Breast Cancer (diagnoses and deaths), United States, 2001 U.S. Female Population Breast Cancer Breast Cancer (age 18+) Diagnoses Deaths Number Health Insurance Coveragea (in 1,000s) % Number % Number % Total 108,752 100.0 203,500 100.0 39,600 100.0 Private or government insurance 93,462 85.9 187,151 92.0 37,171 93.9 Private insurance 77,577 71.3 140,550 69.1 26,319 66.5 Employment-based 66,036 60.7 106,388 52.3 18,390 46.4 Government insurance Medicaid 9,697 8.9 18,196 8.9 3,775 9.5 Medicare 21,480 19.8 93,930 46.2 23,474 59.3 Militaryb 3,305 3.0 7,984 3.9 1,667 4.2 No health insurancec 15,291 14.1 16,350 8.0 2,429 6.1 aCategories are not mutually exclusive. bIncludes CHAMPUS (Comprehensive Health and Medical Plan for Uniformed Services)/ Tricare, Veterans, and military health care. cEstimates are of women without health insurance coverage for the entire year. NOTE: Age-specific insurance rates among U.S. women age 18 and older were applied to incident breast cancer cases and deaths, stratified by age. SOURCES: Insurance rates are from the U.S. Census Bureau, Current Population Survey, Annual Demographic Supplements, Income Statistics Branch/HHES Division, January 30, 2003. Estimates of the number of incident breast cancer cases and deaths are from Cancer Facts & Figures 2002. Estimates of the age distribution of breast cancer incident cases and deaths are from SEER.
168 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER insurance changed following their cancer diagnosis (e.g., 5 percent said that their insurance costs increased (Hewitt et al., 1999). Congress tried to remedy this problem in 1996, enacting the Health Insurance Portability and Account- ability Act (Kennedy-Kassebaum Act) to improve the portability and continu- ity 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 protections for consumers according to the U.S. General Accounting Office. If individuals are uninsured and not eligible for Medicaid, medical expenses related to cancer may force them to âspend downâ to become eligible for Medic- aidâthat is, to deplete their assets until they meet eligibility criteria. Alterna- tively, individuals who are disabled by cancer for a period of 2 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 unin- sured (i.e., under the Hill-Burton Act of 1946). State and federal programs pro- vide free cancer screening and sometimes cover the expense of treatment for the uninsured (e.g., the state option to provide Medicaid coverage for women diag- nosed through the Centers for Disease Control and Prevention [CDC] National Breast and Cervical Cancer Early Detection Program) (http://www.cdc.gov/can- cer/nbccedp/law106-354.htm, accessed April 17, 2003). More than half the states operate high-risk insurance pools to help pro- vide coverage to individuals with serious medical conditions who have been denied private health insurance in the individual market (Achman and Chollet, 2001). The insurance provided through these state risk pools (also known as Guaranteed Access Programs) generally costs more than regular insurance, and in some states there are long waiting lists or the programs are closed to new applicants altogether. More than 153,000 individuals are currently covered by state risk pools (DHHS, 2002). Many charitable orga- nizations (e.g., Cancer Care, American Cancer Society) provide free services or financial assistance to individuals with cancer who lack the means to pay for their care. These programs and services cannot substitute for adequate insurance coverage for cancer care, but they can ease the financial burden for small numbers of individuals in need. Cost, Including Health Insurance and Out-of-Pocket Costs1 Health insurance coverage may not adequately protect individuals from the high costs associated with cancer treatment and may not cover mental 1Much of this section of the report is based on Mental Health: A Report to the Surgeon General, 1999.
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 169 health services. Some policies have high deductibles (e.g., some catastrophic policies may contain a deductible as high as $15,000 or more), and copayments or coinsurance over the course of cancer treatment can be sub- stantial. Relatively few studies specific to cancer exist regarding the magni- tude of the financial burden associated with out-of-pocket costs, but avail- able evidence suggests that it is substantial (Sofaer et al., 1990). Unlike the great majority of employer-provided insurance plans, Medicare does not cap beneficiariesâ total payments for cost sharing (AARP, 1997). Medicare HMOs typically have lower cost sharing than the traditional Medicare pro- gram and may offer additional benefits such as outpatient prescription drug coverage, but they may impose certain restrictions on use of specialty pro- viders (AARP, 1997). Relatively few Medicare beneficiaries are enrolled in HMOs (12 percent as of 2003) (http://cms.hhs.gov/healthplans/statistics/ mmcc/, accessed April 18, 2003). Before 1990, most mental health care was covered by indemnity plans that used benefit limits and patient cost sharing to control service use and spending. By the late 1990s, managed care was the norm in health service delivery, covering an estimated 56 percent of Americans. With the growing complexity of care, it can be difficult to distinguish one type of managed care plan from another, but major types of such plans include: â¢ Health maintenance organizations (HMOs) provide all medical ser- vices on a prepaid, per capita basis. Medical staff members may be salaried, but increasingly HMOs have developed networks of physiciansâso-called Independent Practice Associations, or IPAsâwho are paid on a fee-for- service basis and function under common management guidelines. â¢ Preferred Provider Organizations (PPOs) are managed care plans that contract with networks of providers to supply services. Providers are typi- cally paid on a discounted fee-for-service basis. Enrollees are offered lower cost-sharing to use providers on the âpreferredâ list but can use non-net- work providers at a higher out-of-pocket cost. â¢ Point-of-Service (POS) plans are managed care plans that combine features of prepaid (or capitated) and fee-for-service insurance. Enrollees can choose to use a network provider at the time of service. A significant copayment typically accompanies use of non-network providers. Although few plans are purely of one type, an important difference between a PPO and POS is that in a PPO plan, the patient may select any type of covered care from any in-network provider, while in a POS plan, use of in-network services must be approved by a primary care physician. Increasingly, mental health services are being provided by managed be- havioral health organizations, which are estimated to cover approximately 200 million Americans (IOM, 1997; Goff, 2002). Often mental health ser-
170 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER vices are covered in a separate contract between the payer (insurer or em- ployer) and a behavioral health provider. These so-called âcarve-outâ man- aged behavioral health care arrangements allow payers to isolate mental health services from overall insurance risk and have mental health care ser- vices managed separately from general health care (Box 7-1). This separation is generally acceptable for physically healthy individuals. However, this ar- rangement is highly disadvantageous to patients with a life-threatening or chronic illness who require psychiatric/psychological consultation for related mental disorders (e.g., confusion/delirium from disease or medication or se- vere anxiety or depression). The separation of care delivery can lead to frag- mentation of services across medical and behavioral health providers. Managed care may also serve as a barrier to appropriate psychosocial services when mental health providers who are trained in psycho-oncology and management of distress in patients with cancer are not available within the behavioral health planâs service network. Concerns have been raised that mental health providers in networks often do not have expertise in psycho-oncology (Wellisch, IOM workshop, October 2002). BOX 7-1 Carve-Out Managed Behavioral Health Care Many HMOs and other health plans carve out mental health care for administration by a managed behavioral health company. This arrange- ment permits a larger range of services than can be provided within the health plan and permits the application of specific cost controls to behav- ioral health care. Carve-outs generally have separate budgets, provider networks, and financial incentive arrangements. Covered services, utili- zation management techniques, financial risk, and other features vary depending on the particular carve-out contract. The employee as a plan member may be unaware of any such arrangement. These separate con- tracts delegate management of mental health care to specialized ven- dors known as managed behavioral health care organizations. There are two general forms of carve-outs: â¢ In payer carve-outs, an enrollee chooses a health plan for cover- age of health care with the exception of mental health and must enroll with a separate carve-out vendor for mental health care. â¢ In health plan subcontracts, administrators of the general medical plan arrange to have mental health care managed by a carve-out vendor; the plan member does not have to take steps to select mental health coverage. SOURCE: U.S. Surgeon Generalâs Report, 1999.
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 171 There is a range of management controls currently applied to enrollees in managed care plans (e.g., utilization review). Some are concerned that excessively restrictive cost containment strategies and financial incentives to providers and facilities to reduce specialty referrals, hospital admissions, or length or amount of treatment contribute to lowered access and quality of mental health care (DHHS, 1999). Despite these significant concerns, raised repeatedly by mental health professionals, particularly consultation- liaison psychiatrists who work with the medically ill, the actual impact of these policies has received relatively little systematic study. There are cur- rently no benchmark standards for access to specialized mental health ser- vices for medically ill patients, making assessment of access difficult. Some evidence suggests that, in the general population, the use of mental health care increases after managed behavioral health care is implemented in pri- vate insurance plans (Goldman et al., 1998). This is, in part due to shifts from in-hospital to outpatient mental health care. Most Medicare beneficiaries have coverage of outpatient health ser- vices, including mental health services, through Medicare Part B. Medicare beneficiaries are much less likely than individuals covered by private insur- ance or Medicaid to be in a managed care plan. An estimated 88 percent of beneficiaries are covered under the traditional Medicare fee-for-service pro- gram. Mental health services reimbursed by Medicare include psychiatric diagnostic or evaluative interview procedures, individual psychotherapy, group psychotherapy, family psychotherapy, psychoanalysis, psychological testing, and pharmacologic management (DHHS, 2001). Practitioners who can provide mental health services to Medicare beneficiaries include: physi- cians, clinical psychologists, clinical social workers, nurse practitioners, clinical nurse specialists, and physician assistants (Code of Federal Regula- tions, Title 42, Part 410). Under Medicare, professional fees are based on a relative value scale. Psychologists and social workers are paid on a percent- age markdown from psychiatrists (Frank, 2000). Under traditional Medi- care, beneficiaries pay 50 percent of Medicareâs allowed fee for outpatient mental health therapy. Most Medicare Plus Choice plans also require some cost-sharing for these services (Gold and Achman, 2001). Coverage of mental health benefits under Medicaid is complex, be- cause of the programâs variation in coverage by state. Mandated benefits under Medicaid include general hospital inpatient care, physician services, outpatient services in general hospitals, nursing home care, and prescrip- tion drugs. States have had the freedom to choose a number of optional benefits, for example, non-physician services, services provided in free- standing outpatient clinics, and case management. States have often lim- ited costs and coverage through their reimbursement policies. Fees to pro- fessionals are commonly set well below market levels of reimbursement,
172 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER which limits the supply of physician services to Medicaid beneficiaries (Frank, 2000). State Medicaid programs are increasingly delegating man- agement of mental health services to managed behavioral health care or- ganizations (Frank, 2000). Reimbursement of the treatment of psychosocial services for women with breast cancer through public and private insurers may be facilitated by the development of six reimbursement codes for psychological services to patients with physical health diagnoses (APA, undated memo; http:// www.apa.org/practice/cpt_2002.html, accessed April 17, 2003) (see Box 7-2). The new CPT codes, which became effective January 1, 2002, cover behavioral, social, and psychophysiological procedures for the prevention, treatment, or management of physical health problems. These codes, for the first time, permit reimbursement for treatment by a psychologist with- out the need for a mental health diagnosis (in fact, they cannot be used for treating patients with a psychiatric diagnosis). Types of assessment and intervention services that will be covered by the codes include patient ad- herence to medical treatment, symptom management, health-promoting behaviors, health-related risk-taking behaviors, and overall adjustment to physical illness. For private and third-party insurance plans, the services will likely be treated under the physical illness benefits, and thus not be relegated to behavioral health âcarve outâ programs. BOX 7-2 New Health and Behavior CPT Codes and Associated Medicare Reimbursement Rates Approximate Medicare Payment (in dollars) CPT 15 min 1 hour Code Service (1 unit) (4 units) 96150 Assessment-initial $26 $106 96151 Re-assessment 26 103 96152 Intervention: individual 25 98 96153 Intervention: group (per person) 5 22 96154 Intervention: family w/patient 24 96 96155 Intervention: family w/o patient 23 93 SOURCE: APA, undated memo; http://www.apa.org/practice/ cpt_2002.html, accessed April 17, 2003.
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 173 There have been many efforts to bring coverage of services for mental illness on a par with that for somatic illness. The Mental Health Parity Act of 1996 (PL 104-204) has improved insurance coverage for mental illnesses, but many gaps remain (www.nami.org/update/parity96.html). Implemented in 1998, this legislation focused on only one aspect of the inequities in mental health insurance coverage: âcatastrophicâ benefits. It prohibited the use of lifetime and annual limits on coverage that were different for mental and somatic illnesses. The law does not mandate coverage and applies only to employers that offer mental health benefits. It also does not affect rules for service charges, such as co-payments, deductibles, and out-of-pocket payment limits. A growing number of states have parity legislation, but some states have targeted their legislation narrowly to include only people with severe mental disorders. The experience of a pilot project to incorporate psychosocial support services into an outpatient medical oncology practice illustrates some of the problems encountered in insurance coverage (Sellers, 2000). The project placed a medical family therapist for 20 hours a week in a multi-specialty practice in Seattle. After 6 months of this collaborative practice, the provid- ers reviewed the financial costs and levels of reimbursement for psychoso- cial care. In this practice, 60 percent of patients receiving psychosocial ser- vices had some form of behavioral health coverage and of these 30 percent were Medicare patients. The analysis showed that insurance reimbursements covered 60 percent of the program cost and that external funding would be needed to support the service. The following problems with insurance cov- erage were noted: â¢ Because of frequent changes in insurance carriers and plans, behav- ioral health benefit review was needed for each new patient prior to a visit. â¢ The amount of time and effort required to track down a relatively small number of reimbursement dollars was not cost effective. â¢ Medicare reimbursement was relatively low, roughly half of non- Medicare reimbursement. â¢ For Medicare reimbursement, patients could not see the psychoso- cial provider on the same day as a physician visit. Attributes of the Health Care Delivery System How breast cancer care is organized and delivered can greatly affect access to mental health care services (see also Chapter 6). There is limited information on the extent to which womenâs breast care is coordinated and organized to facilitate the identification and management of psychosocial distress. One important study in this area found breast cancer care sites in New York City to lack comprehensive systems to ensure care coordination
174 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER (Bickell and Young, 2001). While this studyâs findings may not be appli- cable to other geographic areas, it suggests an important link between care coordination and the provision of support services. As part of their study of institutional approaches to coordinate care for women with early-stage breast cancer, Bickell and colleagues completed in- depth semi-structured interviews at six hospitals with providers of breast cancer care and their support staff. Systematic use of patient support pro- grams, such as patient educators and navigators, were perceived to be valu- able in coordinating care. Three of the six sites had patient support pro- grams, which all provided: â¢ a systematic method to identify patients; â¢ education about breast cancer including treatment options and coun- seling; â¢ calls to patients to remind them of upcoming appointments; and â¢ navigators to bring patients to appointments or enable them to at- tend appointments, for example, by arranging for child care or transpor- tation. Two of the three programs were staffed with trained volunteers. Physi- cians found the programs to be extremely valuable because they provided services that were otherwise missing at the sites or supplemented services, thereby reducing physiciansâ work-load. The patient education and coun- seling provided were viewed as improving patientâs understanding and abil- ity to make informed treatment decisions. Also valued were practical social and financial support, such as assistance with (Bickell, workshop presenta- tion, 2002): â¢ navigation through the care system, â¢ forms to get home health aides, â¢ arranging transportation and child care, â¢ completing insurance forms, and â¢ applying for compassionate drug programs. Particularly helpful was having systematic case finding to identify new patients and ensure that the need for supportive care services was assessed and offered. In some cases, women were approached by a person at preadmission testing so that a connection was made to a person who would contact them later. Other programs placed volunteers at key sites, for ex- ample, the breast clinic, mammography clinic, and radiation therapy and infusion suites. According to institutional staff, physician âbuy-inâ was cru- cial to program success. Physicians tended to be initially resistant, but later
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 175 came to rely on services (Bickell, workshop presentation, 2002). In general, barriers to program coordination included: â¢ lack of physician referral; â¢ the fragmentation of care (dispersed offices); â¢ lack of hospital support (i.e., reliance on philanthropy); â¢ difficulty in finding/keeping committed volunteers, especially in poor communities; and â¢ reaching speakers of languages other than English. Findings from this study of breast cancer care delivery are consis- tent with the emerging chronic disease model of care (Von Korff et al., 1997; Wagner et al., 1996). The chronic disease model posits that through more productive interactions between patients and provider teams, functional and clinical outcomes can be improved. The model calls for improvements in coordinated delivery systems including con- necting health systems with community resources to support patients in a meaningful way (www.Improvingchroniccare.org). Research and dem- onstration projects to evaluate this model of care are being supported by the Robert Wood Johnson Foundation. The most extensive effort to improve psychosocial care at a popula- tion level has been in Australia where a National Breast Cancer Center has undertaken review of evidence-based research for psychosocial inter- ventions and developed the findings into recommendations and clinical practice guidelines. National efforts have involved oncologists, mental health professionals, and breast cancer advocacy groups to change cur- rent practices through demonstration projects and education (Redman et al., 2003). Attributes of Individuals Lack of knowledge or misperceptions about mental health services are among the most significant barriers to receipt of appropriate care. Accord- ing to a recent survey, only 55 percent of Americans understand depression is a disease and not a state of mind that a person can snap out of (NMHA, 2001). The 1999 Surgeon Generalâs report on mental illness identified stigma as a major barrier to addressing the nationâs mental health needs. Stigma can be defined as a label that sets a person apart from others and links that person to undesirable characteristics. People tend to reject and avoid stigmatized people. The stigma associated with mental illness may be declining with the growing acceptance of depression and other conditions as treatable health problems. Despite this, patients with a life-threatening illness like cancer often express their reluctance to request psychological
176 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER help because they feel it would be a sign of moral weakness or that they would be labeled by others as âcrazy.â There has been a dramatic increase in the number of people treated for depression in the last 15 years. Between 1987 and 1997, the rate of outpatient treatment for depression increased from 0.73 per 100 persons in 1987 to 2.33 in 1997 (Olfson et al., 2002). The advent of better toler- ated antidepressants, expanded availability of third-party payment, ad- vertising on the part of the pharmaceutical industry, public health cam- paigns to educate the public about depression and reduce its stigma, and the development of more rapid and efficient procedures for diagnosing depression in clinical practice are among the factors thought to contribute to this trend (Olfson et al., 2002). Lower rates of treatment were found among black and Hispanic individuals, those with less education, and those without health insurance. These lower rates of treatment are largely attributable to poor access to mental health care, but they can also be traced to culturally bound attitudes about mental health and related ser- vices. According to one study, fear and stigma associated with seeking emotional support were among the barriers to treatment participation identified among African American cancer patients participating in focus groups (Matthews et al., 2002a). Culture influences many aspects of men- tal health including how patients from a given culture express and mani- fest their symptoms, their style of coping, their family and community supports, and their willingness to seek treatment (U.S. Department of Health and Human Services, 2000). Educating the public about the availability and usefulness of mental health services is a general strategy to improve acceptance and reduce the stigma associated with mental health care. Another strategy that is clini- cally effective with cancer patients is to integrate their psychosocial care into their total care, so that they do not experience a âdisconnectâ and hence do not perceive their psychological care as a separate, potentially stigmatized aspect of care. Conducting a psychosocial assessment routinely with all new breast cancer patients is one way to integrate it into medical care and reduce the perceived stigma of being âsingled-out.â In addition, efforts are needed to improve the cultural competency of mental health providers to address some of the culturally based misapprehensions regard- ing mental health. Attributes of Health-Care Providers A lack of awareness on the part of breast cancer care providers of psy- chosocial needs and available resources, problems in patientâprovider com- munication, and the absence of clear direction on how to distinguish ânor- malâ and expected distress from significant distress that should be referred
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 177 for evaluation by psycho-oncologists are among the factors that inhibit health-care providers in their delivery of optimal psychosocial services. Lack of Awareness of Community Resources There are many support services available to women with breast cancer, but evidence suggests that one barrier to their use is a lack of awareness on the part of physicians and other health-care providers of psychosocial ser- vices in their community. A survey sponsored in 2001 by the American Can- cer Society (ACS) assessed awareness, attitude, and referral to community- based supportive care programs among 2000 physicians, nurses, and social workers who were active members of their respective oncology associations (Matthews et al., 2002b). Awareness of the programs was relatively high, with 77 to 79 percent of respondents aware of three of the most prominent American Cancer Society programs (i.e., I Can Cope, Reach to Recovery, and the ACS Cancer Information Database toll free number). Somewhat fewer, 49 to 59 percent, reported referring patients to these programs, and 55 to 63 percent said that they found them helpful. Social workers in the study were more likely to know about, recommend, and regard program or services as helpful relative to nurses and physicians. A lack of provider referral is often mentioned as a reason for not using psychosocial services (Eakin and Strycker, 2001). According to a study conducted in Montreal, Quebec, relatively few women (42 percent) who had used professionally provided support services had learned about them from their oncologist (Edgar et al., 2000). Problems in PatientâProvider Communication A basic psychosocial support for women with breast cancer is their rela- tionship to physicians who provide them with full information, who are willing to answer questions and show respect for the âhumanâ side of illness. Psycho- social distress among patients may not be addressed in practice because of problems in patientâprovider communication, and efforts are under way to improve oncologistsâ communication skills (Baile et al., 1999; Fallowfield et al., 2001; Schapira, 2003) (see also Chapter 4 for a discussion of the education and training of psychosocial service providers). Some problems can be traced to the tendency for patients to wait for physicians to inquire about their coping or distress, or to inquire about support groups or a mental health referral. Physi- cians may assume that patients will ask for such help if it is needed. This âdonât ask, donât tellâ policy is even more pervasive in busy outpatient clinics (Hol- land, 1999). Evidence of this kind of miscommunication comes from a study conducted in the Netherlands where patients and oncologists were found to be willing to discuss a wide range of quality of life issues, but had competing expectations as to who should initiate such discussions (Detmar et al., 2000). In
178 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER their study of 274 patients receiving palliative chemotherapy and the ten physi- cians who cared for them, almost all patients were willing to address their emotional functioning and daily activities, but a sizable share (25 percent) of patients were only willing to discuss these issues at the initiative of their physi- cian. This was especially true for older and less well-educated patients. All of the physicians, however, indicated that they generally defer to their patients in initiating discussions of psychosocial issues. This study also found some resis- tance to discussing psychosocial issues, with 20 percent reporting no interest in discussing their family and social life. Overcoming communication problems is a promising approach to im- proving psychosocial care, with attention to recognizing distress and aware- ness of cultural factors in coping with illness. Enhanced communication often improves patientsâ psychological adjustment, and conversely, interventions that lower distress and modify coping style will often enhance communica- tion (Lerman et al., 1993). A high degree of physician-initiated communica- tion has been associated with increased patient satisfaction in the context of discussing treatment options for breast cancer (Liang et al., 2002). A program to enhance doctorsâ communication skills is an integral part of the national strategy in Australia to improve breast cancer psychosocial care (Redman et al., 2003; Butow, 1995). Increasing the recognition and management of depression through communication education programs has shown promise among primary care providers (Gerrity et al, 1999; Roter et al., 1995), indicating that such an approach holds promise for improving psychosocial care among cancer care providers. Lack of Widespread Adoption of Clinical Practice Guidelines Efforts to improve the provision of psychosocial services for women with breast cancer have recently focused on implementing clinical practice guidelines. Clinical practice guidelines are âsystematically developed state- ments to assist practitioner and patient decisions about appropriate health care for specific clinical circumstancesâ (IOM, 1990). Guideline recommen- dations are ideally based on high-level evidence (i.e., clinical trials and meta- analyses). Guidelines are available for the treatment of breast cancer, fol- low-up care post-treatment, management of cancer-related psychosocial distress, and more generally for the assessment and management of mental disorders such as depression. This section of the report reviews the status of these guidelines and their potential to improve the management of psycho- social distress for women with breast cancer. The most widely used American breast cancer clinical practice guide- lines do not address the management of psychosocial distress. The National Comprehensive Cancer Network (NCCN), a coalition of major cancer cen- ters (Figure 7-1), has published guidelines for breast cancer treatment and
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 179 FIGURE 7-1 Institutional members of the National Comprehensive Cancer Network. SOURCE: http://www.nccn.org/, accessed April 17, 2003. for cancer-related fatigue, pain, distress, and palliative care (Benedetti et al., 2000; Carlson et al., 2000; Levy et al., 2001; McGivney et al., 2000; Mock et al., 2000; NCCN, 1999). In 1999, NCCN established a multidisciplinary panel to develop management and clinical practice guidelines for mental health, social work, and pastoral counselors (NCCN, 1999) (Box 7-3). De- veloped by a multidisciplinary panel, the NCCN psychosocial distress guide- line is intended for use in busy outpatient oncology practices to quickly identify patients who are distressed, by use of a rapid screening tool, and to provide an algorithm for triage to psychosocial support services. The NCCN guideline has been endorsed by several organizations: American Psychoso- cial Oncology Society; Oncology Nursing Society; American Society of Oncology Social Work; Professional Chaplainsâ Organization; American College of Surgeons, Commission on Standards for Cancer Care; and the American Community Cancer Centers (Holland et al., 2001). Guidelines developed in countries such as Australia, Canada, and Scot- land have attempted to incorporate the management of psychosocial con- cerns into their cancer-related clinical practice guidelines (Table 7-2). The potential need to provide support and counseling with additional visits for some women, for example, is noted in the guidelines for follow-up after treatment for breast cancer published by The Canadian Steering Committee
180 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER BOX 7-3 Standards of Care for Distress Management â¢ Distress should be recognized, monitored, documented, and treated promptly at all stages of disease. â¢ All patients should be screened for distress at their initial visit, at appropriate intervals and as clinically indicated. â¢ Screening should identify the level and nature of the distress. â¢ Distress should be assessed and managed according to clinical practice guidelines. â¢ Multidisciplinary institutional committees should be formed to implement standards for distress management. â¢ Educational and training programs should be developed to en- sure that health-care professionals and clergy have knowledge and skills in the management of distress. â¢ Mental health professionals and clergy experienced in psychoso- cial issues in cancer should be available as staff members or by referral in a timely manner. â¢ Medical care contracts must include reimbursement for the man- agement of distress. â¢ Clinical health outcomes measurement must include assessment of the psychosocial domain, e.g., cost-effectiveness, quality of life, and patient satisfaction. â¢ Patients and families should be informed that management of distress is an integral part of total medical care. â¢ Quality of the management of distress should be included in insti- tutional continuous quality improvement (CQI) projects. SOURCE: NCCN (1999). on Clinical Practice Guidelines for the Care and Treatment of Breast Can- cer (Canadian Medical Association, 1998). The Canadian guideline states that âpsychosocial support should be encouraged and facilitatedâ (Cana- dian Medical Association, 1998). The Scottish Intercollegiate Guidelines Network (SIGN), Guideline on Breast Cancer in Women calls for specific action on the part of oncology caregivers in the section on psychosocial aspects of care (SIGN guideline, section 16): â¢ âAll professionals involved in the management of patients with breast cancer should have a high index of suspicion regarding the presence of psychological and psychiatric problems.â â¢ âPatients with significant psychological problems should be assessed by a liaison psychiatrist or clinical psychologist.â
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 181 TABLE 7-2 Selected Clinical Practice Guidelines for the Management of Psychosocial Distress Guideline Description Status National Comprehensive Cancer Stand-alone guideline for the Adopted by several Network (NCCN) Guidelines for management of psychosocial professional organizations, the Management of Psychosocial. distress (not site specific). no data on adoption or use. Distress, US, 1997 (www.nccn.org) Canadian Association of Standards for the delivery of CAPO has examined Psychosocial Oncology (CAPO), psychosocial services, personnel needs and has National Psychosocial Oncology research, and education in appealed to provincial Standards for Canada, 1999 oncology (not site specific). government for assistance (www.capo.ca/finalstandards.cfm) in adopting standards. Scottish Intercollegiate Breast cancer guideline Applied within the Guidelines Network (SIGN), incorporates consideration of National Health Service in Guideline on Breast Cancer in psychological and psychiatric Scotland. Responsibility Women, 1998 problems. for implementation rests (http://www.sign.ac.uk/guidelines with each individual NHS /published/index.html) Trust. Australian National Health and Specific psychosocial Extensive experience with Medical Research Council, guideline on breast cancer. adoption of psychosocial Psychosocial Clinical Practice guidelines into breast Guidelines: Information, Support, cancer care. and Counseling for Women With Breast Cancer, 1999 (http://www.nbcc.org.au/) â¢ âPatients should be given appropriate information over a period of time, since what they may wish, or need to know, may vary over time.â This strategy of incorporating consideration of psychosocial concerns into clinical guidelines encourages the integration of psychosocial services into routine care. Australia has the most extensive experience in the adoption of psycho- social guidelines, and in many respects, can serve as a model. Their guide- line âPsychosocial Clinical Practice Guidelines: Information, Support, and Counseling for Women with Breast Cancerâ was published in 1999 and has subsequently been adopted as the standard of care in major health service delivery programs (Redman et al., 2003). An initiative to provide training in communications to clinicians involved in breast cancer care is under way, and the Royal Australian College of Physicians is in the process of imple- menting an approach to compulsory communication skills training for its
182 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER medical oncology trainees (Redman et al., 2003). All trainees are strongly encouraged to undertake communication skills training, which is provided free of charge, and participation is compulsory for some trainees depending on skill level. The employment of specialist breast nurses is being promoted to improve patient education, satisfaction, and care coordination (Parle et al., 2001). In addition, an audit of care is being conducted, through a population-based survey of women with early breast cancer, to assess whether womenâs receipt of information and supportive care is in line with guideline recommendations (Redman et al., 2003). National efforts are under way to educate advocacy groups and health professionals about psychosocial issues in breast cancer and to influence health policy through a coalition of consumer advocates and professionals. A number of issues are unresolved in the area of guideline development. It is unclear, for example, whether psychosocial guidelines need to be tumor specific. Generic guidelines for the management of psychosocial distress may be needed, with special modules to address site-specific issues (e.g., body image, sexuality) (Winn, workshop presentation, October 2002). There are many general mental health guidelines available for the man- agement of common psychiatric conditions such as depression. The Na- tional Guideline Clearinghouse, a repository of evidence-based clinical prac- tice guidelines maintained by the Agency for Healthcare Research and Quality, the American Medical Association, and the American Association of Health Plans includes 94 mental disorder-related guidelines, but none is specific to cancer (http://www.guideline.gov/index.asp, accessed January 23, 2003). The only cancer-specific psychosocial guidelines are those from NCCN, Australia, Canada, and Scotland. The American Society of Clinical Oncology (ASCO) has issued 17 clini- cal practice guidelines; however, none addresses psychosocial issues (http:// www.asco.org/ac/1%2C1003%2C_12-002130%2C00.asp, accessed April 18, 2003). ASCO has a communication initiative under way for practicing oncologists and trainees that addresses some of the related issues, for ex- ample, communication skills in delivering bad news and implications of cultural diversity on practice. Programs addressing how and what to tell children when a parent has cancer are being developed. For example, a unique program at Massachusetts General Hospital (called PACTâ Parenting at Challenging Times) has five trained child psychologists and psychiatrists available to provide free consultation and psycho-education to adults undergoing cancer treatment, and a national Internet program, KIDS KONNECT, has been established. The development and dissemination of guidelines alone has minimal effect on clinical practice, but a growing body of evidence indicates that when guideline development includes providers, and when guidelines are implemented with systems in place to give provid- ers information about their practice and remind them to use the guidelines,
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 183 the quality of care can improve. Also recognized as essential to guideline implementation is up-front involvement of leaders from the health profes- sions and representatives of patients in the guideline development process (IOM, 2001; Smith and Hillner, 2001). Guidelines can be effective in aligning care with evidence-based stan- dards and can also influence insurers in their coverage policies. For example, reimbursement for psychosocial assessments prior to bone marrow transplan- tation has been easier to obtain from insurers following the publication of the American Society of Blood and Marrow Transplantation guideline that rec- ommends a psychiatric consultation as part of the transplant work-up (Rich- ard McQuellon, Associate Professor and Director, Psychosocial Oncology and Cancer Support Programs, Wake Forest University/Baptist Medical Cen- ter, personal communication to Maria Hewitt, November 4, 2002). Although bone marrow transplantation is not recommended for women with advanced breast cancer, these guidelines have facilitated the use of psychosocial services among those for whom the intervention is appropriate. Ideally, clinical practice guidelines not only give providers the guidance they need to deliver interventions, they also lay out a plan for the integration of services into the delivery of care. Such a plan for the integration of psycho- social services into oncology practice is outlined in Figure 7-2. The essential steps according to this scheme include screening patients for distress as they Waiting Oncology Referral Room Office Referral Mental Health Mod â Severe Social Work Assessment by Distress Brief screen Primary Oncology For distress Team and problem list â¢ Oncologist Pastoral â¢ Nurse Counseling â¢ Social Worker Mild Distress Oncology Team FIGURE 7-2 The integration of psychosocial services into oncology practice. SOURCE: Holland, workshop presentation, October 2002.
184 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER wait for their appointments using a simple self-report. Concerns raised by the assessment are addressed during the clinical encounter, and as necessary ac- cording to the assessment, patients are referred to the appropriate psychoso- cial service, which is determined by the nature of the problems. Oncology providers remain an integral part of the process insofar as they continue the evaluative and treatment process at subsequent appointments. The roles of mental health, social work, and pastoral care providers in assessing need and providing psychosocial services are delineated in Table 7-3. The NCCN guidelines on psychosocial distress were developed in 1997, and research to assess their value is ongoing. However, there is little available information on the extent of their use, their feasibility, and their potential to improve the quality of care and reduce psychosocial distress. A validation study in four institutions has been completed to test the use of the Distress Thermom- eter and Problem List (Jimmie Holland, personal communication to Maria Hewitt, 2003). Needed are well-designed research studies to investigate the value of guidelines. The NCCN guidelines are not specific to type of cancer, and questions remain regarding the need for specific modules to address some of the issues unique to certain types of cancer, for example, to address sexuality and body image in breast cancer, in particular. Other questions remain regard- ing their implementation, for example, which assessment tools should be used and how the assessment might be carried out in busy oncology practices. How psychosocial guidelines can be integrated into guidelines that direct the treat- ment of the different sites of cancer also needs to be addressed. The American Psychological Association has developed a template for constructing psychological intervention guidelines that stresses the impor- tance of both efficacy (internal validity) and clinical utility (external validity) (Barlow and Barlow, 1995). Important aspects of clinical utility include: â¢ Feasibility, whether patients find the guideline acceptable, ease of adoption and use; â¢ Generalizability, whether the guidelines are applicable across cul- tural groups, ages, and other patient characteristics; â¢ Costs and benefits, including both costs to individuals and society. Lack of Accepted Methods of Clinical Assessment2 While guidelines call for the recognition of psychosocial distress in pa- tients, they generally do not provide specific guidance on how to go about 2This section of the chapter is based on a background paper written for the Board by Patricia A. Ganz, M.D., Jonsson Comprehensive Cancer Center, UCLA Schools of Medicine and Pub- lic Health, Los Angeles, CA (www.iom.edu/ncpb).
TABLE 7-3 NCCN Distress Management Guideline (Version 1. 1999) Expertise Areas to evaluate Interventions Guideline-directed treatment Mental health â¢ Distress â¢ Adjustment disorders â¢ Behavior/symptoms â¢ Major depression â¢ Psychiatric history/medications â¢ Delirium â¢ Pain syndromes â¢ Anxiety disorders â¢ Body image/sexuality â¢ Dementia â¢ Ethical dilemmas â¢ Substance use â¢ Personality disorders Social needs Social work â¢ Family dysfunction â¢ Supportive psychotherapy and follow-up â¢ Social isolation/conflict â¢ Community resource mobilization â¢ Decision-making, quality of life issues â¢ Cognitive-behavioral therapy â¢ Advance directive â¢ Problem-solving teaching â¢ Domestic violence â¢ Advocacy and family/patient education Practical needs â¢ Education/support group sessions â¢ Illness-related needs assessment â¢ Resource lists â¢ Basic needs including housing, food, finance assistance programs, transportation â¢ Employment/school/career concerns Pastoral care â¢ Isolation from religious community â¢ Spiritual counseling â¢ Grief â¢ Referral to mental health as needed â¢ Guilt â¢ Hopelessness â¢ Concerns about death and afterlife â¢ Conflicted or challenged belief systems â¢ Loss of faith â¢ Concerns with meaning/purpose of life â¢ Concerns about relationship with deity â¢ Conflict between religious beliefs and recommended treatment â¢ Ritual needs 185 SOURCE: Adapted from NCCN, 1999.
186 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER identifying individuals in need of intervention. Effective assessment strate- gies for psychosocial distress are needed because symptoms and concerns of women with breast cancer frequently go undetected in both the oncology setting and in primary care. One study of 2,300 cancer patients in 34 hospi- tals across Britain found that while more than a third of cancer patients (all types) could have benefited from some type of psychological help, the spe- cialists treating them only spotted the symptoms in 29 percent of these distressed patients (Fallowfield et al., 2001). Patients with overt symptoms of distress were the most likely to be identified. In a United States-based study of 1,109 patients seen in 25 ambulatory oncology clinics (treated by 12 oncologists), physiciansâ perceptions of depressive symptoms in their patients were correlated with patientâs ratings, but physicians tended to underestimate the level of depressive symptoms in the most severely de- pressed patients. The authors concluded that screening instruments and the use of brief follow-up interviews would help to systematically identify pa- tients who are depressed (Passik et al., 1998). Routinely asking all women about psychosocial distress during visits for care using validated screening instruments could effectively focus lim- ited health care resources on individuals who are most likely to need them. Despite the intuitive appeal of such an approach, it has rarely been adopted, and when it has, the outcome of screening has not been evaluated. The oncology group at Johns Hopkins has been screening patients with the Brief Symptom Inventory (BSI) for over a decade (Zabora et al. 1990); however, there has been limited reporting of the impact it has made on clinical care and practice at that institution. It is important to distinguish screening from assessment. As described by Zabora, âScreening is a rapid method to prospectively identify potential patients who may experience significant difficulty in their attempts to cope and adapt to their diagnoses and treatments. Screening is a predictive model. Assessment seeks to accomplish a series of tasks in the early phases of a relationship with a patient. These tasks include an estimate of the severity of the patientâs distress, definition of the initial course of action, develop- ment of a dynamic understanding of the patient, the establishment of a diagnosis, and the first step in the development of a therapeutic relation- shipâ (Passik et al., 1998; Zabora, 1998). A major impediment to the adoption of screening is the limited clinical experience with the many assessment tools that have been developed in re- search settings (see Chapter 3 for a description of these instruments). While many clinical trials support the value of psychosocial interventions, there have been no studies demonstrating that systematic screening of women with breast cancer for psychosocial distress has led to improved health and quality of life. The potential impact of screening on the use of mental health and community services is also needed to help gauge the adequacy of the supply
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 187 of support services. Applied research in this area is in progress and is sorely needed (Holland, workshop presentation, October 2002). In the Boardâs review of the literature, only one study was found that attempted to screen for anxiety and depression in breast cancer patients in the clinical setting as part of a quality assurance project (Payne et. al., 1999). In that study, three different instruments were evaluated (Hospital Anxiety and Depression Scale [HADS], the Brief Symptom Inventory [BSI], and a single-item visual analog scale) (see Chapter 3 for descriptions of these as- sessment tools). All three instruments were effective in identifying women with psychosocial distress, but the authors concluded that the HADS seemed to be the simplest and most practical tool to use in this setting (Payne et al. 1999). Some screening instruments have been adapted so that they can be administered in waiting rooms using touch screens on computers. Scored results are available immediately to providers so that they can discuss re- sults during the scheduled visit (Cull et al., 2001). The results of psychoso- cial assessments may be of some value and interest to women who are inter- ested in charting their reactions to their disease and treatment. In choosing a screening instrument, clinicians need to assess whether they want to focus on psychiatric disorders such as anxiety and depression (e.g., as measured in HADS), or whether they want to assess broader qual- ity of life concerns such as symptoms (e.g., fatigue, pain), social issues (e.g., relationships and family concerns), and practical problems (e.g., problems working, paying for care) (e.g., as measured in the CARES instrument or the NCCN distress thermometer). Despite the lack of evidence for the benefits of screening for psychosocial distress in the cancer context, there is widespread agreement that clinicians should at least be screening their patients for depression which is a prevalent, treatable, condition in the general population, and of higher prevalence among individuals with chronic illness such as cancer. The U.S. Preventive Services Task Force, for example, issued guidelines in 2002 recommending that pri- mary care physicians routinely screen their patients for depression using any one of a number of validated screening instruments (http://www.ahrq.gov/ clinic/uspstf/uspsdepr.htm) (Pignone et al., 2002; Williams et al., 2002). The Task Force concluded that screening for depression can improve outcomes, particularly when screening is coupled with system changes that help ensure adequate treatment and follow-up (Pignone et al., 2002). A past history of depression or prior psychological difficulties places individuals at higher risk of psychosocial distress and early referral of such patients for additional support following a diagnosis of breast cancer may be indicated. In addition, younger women, women with other comorbid conditions, and women with limited social support should be carefully as- sessed for the additional distress they may experience in association with the cancer diagnosis.
188 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER A stepped care approach can be envisioned so that individuals with mild distress could be treated by oncology providers, moderately distressed patient referred to community resources, and severely distressed patients referred to psychologists and psychiatrists. This model has been adapted from the widely used WHO Analgesic Ladder for pain management (Figure 7-3). The inclusion of a nursing or mental health specialist as part of the care team in larger practices such as comprehensive breast care programs can facili- tate both screening and the provision of services (Sorensen and Liu, 1995). In these settings, early contact with a mental health professional is routine which destigmatizes use of services and facilitates referral for individual or group coun- seling. While this approach may not be feasible in all practice settings, use of the screening tools described earlier in all patients could alert the practicing physician to patients who need appropriate referrals. In a study of the effect of counseling by a nurse specialist on recovery among breast cancer patients fol- lowing mastectomy conducted in the late 1970s, the nurseâs regular monitoring of womenâs progress facilitated the recognition and subsequent referral of three- quarters of women who needed psychiatric help (Maguire et al., 1980). DISTRESS LADDER: MANAGEMENT BY STANDARDS & PRACTICE GUIDELINES S ION NG CAT ELI EDI OUNS >5 4 M DC SEVERE AN L AL CIA ITU H OSOL; SPIR SYC RA RY 3 P HAVIO ENTA DISTRESS BE PLEM Scale (0â10) MODERATE COM ND TS M A POR TEA L SUP CAL IONA <5 EDI 2 M OFESS PR TS MILD POR SUP TY UNI MM / CO ILY AM 1 F "NORMAL" FIGURE 7-3 Stepped care approach to managing psychosocial distress. SOURCE: Holland, workshop presentation, October 2002
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 189 Psychosocial needs change over the cancer care trajectory, so that reassess- ment is necessary during and after treatment or during the recovery phase. The assessment must be sensitive to the changes in psychosocial needs. Survivorship issues like sexual problems, distress related to body image, cognitive function, and lymphedema may only emerge following treatment. Assessments must take into consideration the context of a womanâs age and social situation. Family, career, sexual, and reproductive issues may be at the forefront of concerns for younger women. Women in midlife may, in addition, have concerns related to menopause, while elderly women may have distinct concerns regarding other chronic health conditions. Some issues not of concern around the time of diagno- sis may emerge later as sources of distress, for example, body image. How often an assessment is done may depend on the planned schedule of visits for follow-up for women with breast cancer. Who performs the assessment may vary depend- ing on whether women are followed by their oncology or primary care provider. There is a fear that screening will result in identifying so many women that they cannot be given the psychosocial services needed. Where routine screening has been adopted, for example, at the Johns Hopkins Oncology Center, this has not occurred. In fact, screening all patients helps deploy available services to those most in need and allows referral of others to groups and community resources. Assistance to the primary oncology team in identifying patients who are distressed, by means of a screening tool, can also provide a triage algorithm to use for referral to specialized psychoso- cial services. This has proved to be the case in pain management which has improved by asking patients to rate their pain on a scale of 1 to 10, and using any score above 5 as indication for a pain consultation. The NCCN distress thermometer follows the same algorithm. Inadequate Quality Assurance and Accountability There is no one system to assure the quality of cancer care, but several programs in place could potentially serve to improve access to psychosocial services. As described in Chapter 6, there are two sets of standards that address cancer-related quality of care, those of the American College of Surgeonsâ (ACoS) Commission on Cancer (CoC), and those of the Associa- tion of Community Cancer Centers (ACCC). Of the two, the standards of the CoC affect more individuals with cancer because an estimated 82 per- cent of new cases of cancer are seen in the 1,428 hospitals approved by the CoC. Staffing and programmatic needs are outlined in these standards to ensure, at a minimal level, the capacity to provide psychosocial service. The American Cancer Society (ACS) has launched an ambitious com- munity-based Quality of Life initiative aimed at cancer patients and their caregivers and families. The provision of psychosocial services is an impor- tant component of its initiative (Box 7-4).
190 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER BOX 7-4 American Cancer Society Nationwide Objectives to Improve the Quality of Life (QoL) of Cancer Patients and Their Caregivers and Families QoL Goal: Measurable improvement in the quality of life (physical, psychological, social, and spiritual) from the time of diagnosis and for the balance of life of all cancer survivors by the year 2015. PHYSICAL ASPECTS OF QUALITY OF LIFE â¢ Physical Effects: By 2015, provide appropriate care for symptom control, emphasizing pain, fatigue, rehabilitation, and side effects of treat- ment based upon an appropriate care plan using uniform standards of care for 90% of cancer survivors. â¢ Pain Control: By 2015, provide appropriate care for the control of pain based upon an appropriate care plan using uniform standards of care for 90% of cancer survivors. By 2005, 75% of health care systems will have institutionalized quality standards for the management of pain. â¢ Physical Appearance: By 2015, the negative impact of cancer on physical appearance and body image will be substantially reduced in 75% of those affected cancer survivors. SOCIAL ASPECTS OF QUALITY OF LIFE â¢ Social Support: By 2005, the number of cancer survivors, their families, and caregivers who participate in appropriate ACS patient sup- port programs or are referred to other community programs will increase by at least 50%. â¢ By 2005, 60% of survivors, their families, and caregivers will be aware of and have knowledge about American Cancer Society quality of life education and support services. PSYCHOLOGICAL AND SPIRITUAL DOMAINS â¢ Psychological, Emotional, Spiritual Effects: By 2015, 90% of can- cer survivors and families and caregivers of those affected by cancer will receive appropriate care or appropriate referral to services for identified psychological, emotional, and spiritual problems and/or needs. â¢ Provider Education: By 2015, 90% of health care providers will assess psychological, emotional, and spiritual needs of cancer survivors and families and caregivers of those affected by cancer and provide ap- propriate care or appropriate referral to services. SOURCE: B. Teschendorf, October workshop, 2002.
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 191 Achieving these national goals will involve actions at the 17 ACS Divi- sions throughout the country (B. Teschendorf, IOM workshop, 2002). To aid in implementation, assessments of community resources are taking place and a database is being created, by state, within each Division. The data- base will be used for referral and as a navigation tool. Certain areas will aim to be designated as âCommunities of Excellenceâ through the setting of specific goals and the measurement of their achievement. Working with advocates and consumers, some communities might elect to focus on pain, social support, or other areas within the broad set of quality of life mea- sures. Worksites provide another opportunity to implement the ACS goals. ACS is planning a program for large employers to ease the transition of cancer survivors back to work. Other cancer advocacy organizations have promoted an awareness of psychosocial services as a part of quality cancer care. The National Breast Cancer Coalition (NBCC), for example, has published a Guide to Quality Breast Cancer Care for consumers that identifies social and support services as part of comprehensive care (NBCC, 2002). The National Coalition for Cancer Survivorship (NCCS) has published quality imperatives (Box 7-5) that include the need for psychosocial services (see principle 5 below) and BOX 7-5 Quality Cancer Care: Declaration of Principles, National Coalition for Cancer Survivorship Principle 1 People with cancer have the right to a system of universal health care. This access should not be precluded because of preexisting conditions, genetic or other risk factors, or employment status. Principle 2 Quality cancer care should be available in a health care system whose standards and guidelines are developed in consideration of treating the whole person with cancer. Health care plans must regard the cancer patient as an autonomous individual who has the right to be involved in decisions about his or her care. Principle 3 Standards of cancer care should be driven by the quality of care, not only by the cost of care, and should include participation in clinical trials and quality of life considerations. Principle 4 All people diagnosed with cancer should have access to and coverage for services provided by a multidisciplinary team of care provid- ers across the full continuum of care. Health care plans should be held continued
192 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER accountable for timely referral to appropriate specialists when symptoms of cancer or its recurrence may be present. Principle 5 People with cancer should be provided a range of benefits by all health care plans that includes primary and secondary prevention, early detection, initial treatment, supportive therapies to manage pain, nausea, fatigue and infections, long-term follow-up, psychosocial ser- vices, palliative care, hospice care, and bereavement counseling. Principle 6 People with histories of cancer have the right to continued medical follow-up with basic standards of care that include the specific needs of long-term survivors. Principle 7 Long-term survivors should have access to specialized follow-up clinics that focus on health promotion, disease prevention, rehabilitation, and identification of physiologic and psychosocial prob- lems. Communication with the primary care physician must be main- tained. Principle 8 Systematic long-term follow-up should generate data that con- tribute to improvements in cancer therapies and decreases in morbidity. Principle 9 The responsibility for appropriate long-term medical care must be shared by cancer survivors, their families, the oncology team, and primary care providers. Principle 10 The provision of psychosocial services must be safe- guarded and promoted. Persons diagnosed with cancer should receive psychosocial assessments at critical junctures along the continuum of cancer care to determine availability of needed support and their ability to seek information and to advocate on their own behalf. Principle 11 Psychosocial research is integral to comprehensive cancer care and, as such, psychosocial outcome measures should be included in all future clinical trials. The importance of this research and its applica- tion and transfer to oncology care plans should be recognized and en- couraged. Principle 12 Cancer survivors, health care providers and other key con- stituency groups must work together to increase public awareness; edu- cate consumers, professionals, and public policy makers; develop guide- lines and disseminate information; advocate for increased research funding; and articulate for and promote survivorsâ rights. SOURCE: NCCS, 1995.
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 193 has created a cancer survivorship tool kit to help patients advocate for care that meets these quality standards (http://www.canceradvocacy.org/). With nearly half (45 percent) of new cases of breast cancer occurring among women age 65 or older, the Medicare program has an interest in ensuring the delivery of quality care to its beneficiaries. The agency oversee- ing the Medicare program, the Centers for Medicare and Medicaid Services (CMS), has systems in place to monitor quality of care, but assessments to date on cancer-related care have focused on breast cancer screening (IOM, 2003). Assessments of the delivery of psychosocial care are hampered by the lack of validated measures of quality. The National Quality Forum (NQF) is a not-for-profit membership organization created in 2000 to de- velop and implement a national strategy for healthcare quality measure- ment and reporting (http://www.qualityforum.org/, accessed April 18, 2003). In 2002 the NQF formed a Cancer Care Quality Measures Steering Committee to reach consensus on a core set of quality measures. Breast cancer is one of the focus areas of this activity, as well as symptom manage- ment and palliation. There is more experience with quality of care measurement for breast cancer care, relative to other types of cancer care (IOM/NRC, 2000). The Foundation for Accountability (FACCT), for example, developed a set of breast cancer quality indicators which included satisfaction with care, and quality of life as measured by the Cancer Rehabilitation Evaluation System (CARES) instrument (see Chapter 3 for a description of this instrument). The Providence Health System uses FACCT to assess breast cancer care within its 17 member institutions (located from California to Alaska) (http:// www.providence.org/Oregon/Programs_and_Services/Research/CORE/ performance, accessed April 18, 2003). More direct measurement of the provision of psychosocial care within systems of care have not yet been performed, but could likely be incorporated into assessments of satisfaction of care. In a review of quality-of-care measure that could be used to assess oncology practice, Mandelblatt and colleagues suggest that rates of clinical assessment of the need for psychological support services (both group and individual) could be documented and serve as a process measure of rehabili- tative care (Mandelblatt et al., 1999). Evaluations of the feasibility and value of such quality of care assessments are needed. SUMMARY AND RECOMMENDATIONS Many barriers need to be overcome to meet the psychosocial needs of women with breast cancer. Lack of access to health care is a general societal problem in America. An estimated 8 percent of women with breast cancer lack health insurance coverage, and many more have inadequate health insurance coverage for even basic health care needs. Health insurance cov-
194 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER erage often provides poor coverage of mental health benefits or imposes restrictions on benefits through high out-of-pocket payments or limits on care. At the individual level, the stigma associated with seeking mental health care can inhibit use of services, but such stigma may be waning with the well-publicized successes of the treatment of common disorders like depression. Health-care providers can serve as barriers to appropriate psychosocial care if they fail to acknowledge such issues in the course of providing cancer care or if they do not refer patients to available services. Implementing clinical practice guidelines that incorporate assessment and treatment of psychosocial distress is a promising strategy to overcome many of these barriers. While there is limited evidence on the use and effectiveness of such guidelines in reducing psychosocial distress and improving quality of life of women with breast cancer, the guidelines have established the first stan- dards for care in this âsoftâ area of clinical work. As such, these guidelines have provided the first benchmarks against which to monitor psychosocial care and services. At present there is little evidence that psychosocial interventions are integrated into routine breast cancer care. In general, the oncology nurse and social worker serve as front line staff to identify patients in need of psychosocial services. Guidelines are available to help clinicians identify and manage individuals with cancer who are distressed, but the Board could identify no studies of their use. Perhaps a demonstration project could explore this. Certain organizations, for example, the American Col- lege of Surgeonsâ Commission on Cancer, have developed standards to ensure the availability of psychosocial services, but a consideration of such standards is usually outside of the scope of ongoing quality assurance programs. To overcome the range of barriers to delivering psychosocial services to women with breast cancer, the Board recommends that: 1. Breast cancer care clinicians, such as oncologists and other medical professionals, responsible for the care of women with breast cancer should incorporate planning for psychosocial management as an integral part of treatment. They should routinely assess and address psychosocial distress as a part of total medical care. Validated assessment tools are available to screen for psychosocial distress and especially for anxiety and depression. Quality of life instruments also can be used to identify function (psycho- logical, social, physical, sexual) and to facilitate discussion of patient con- cerns, and serve as a basis for referral. Financial considerations may dictate that in most instances screening is carried out using simple, rapid tools such as the Distress Thermometer or Hospital Anxiety and Depression Scale (HADS).
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 195 2. Providers of cancer care should meet the standards of psychosocial care developed by the American College of Surgeonsâ Commission on Can- cer and follow the National Comprehensive Cancer Networkâs (NCCN) Clinical Practice Guidelines for the Management of Distress. Education about psychosocial needs and services should be undertaken through col- laboration between professional organizations and advocacy groups. 3. The NCI, the American Cancer Society (ACS), and professional orga- nizations (e.g., American Society of Clinical Oncology, American College of Surgeons, American Association of Colleges of Nursing, American Psychoso- cial Oncology Society, American Society of Social Work, American Society for Therapeutic Radiology and Oncology, Oncology Nursing Society) need to partner with advocacy groups (e.g., National Breast Cancer Coalition, Na- tional Alliance of Breast Cancer Organizations,Wellness Community, NCCS) to focus attention on psychosocial needs of patients and resources that provide psychosocial services in local communities and nationally. Organizations with effective outreach to cancer constituencies should be assisted in making resource directories available to providers and pa- tients; these directories would identify the range of supportive services, from the free services of advocacy groups to services provided by mental health professionals. Translational research is also needed to test interventions to overcome barriers to the provision of effective psychosocial care within practice set- tings. The current status of psychosocial research and the Boardâs recom- mendations for research action are discussed in Chapter 8. REFERENCES Achman L, Chollet D. 2001. Insuring the Uninsurable: An Overview of State High-Risk Health Insurance Pools. Mathematica Policy Research, Inc. Princeton, NJ. [Online]. Available: http: //www.mathematica-mpr.com/3rdlevel/uninsurablehot.htm [accessed March 21, 2003]. American Association of Retired Persons (AARP), Public Policy Institute and the Lewin Group. 1997. Out-of-Pocket Health Spending by Medicare Beneficiaries Age 65 and Older: 1997 Projections. Ayanian JZ, Kohler BA, Abe T, Epstein AM. 1993. The relation between health insurance coverage and clinical outcomes among women with breast cancer. N Engl J Med 329(5):326â331. Baile WF, Kudelka AP, Beale EA, Glober GA, Myers EG, Greisinger AJ, et al. 1999. Commu- nication skills training in oncology: Description and preliminary outcomes of workshops on breaking bad news and managing patient reactions to illness. Cancer 86:887â897. Barlow DH, Barlow DB. 1995. Practice guidelines and empirically validated psychosocial treat- ments: Ships passing in the night? Behavioral Healthcare Tomorrow May/June 25â29, 76. Benedetti C, Brock C, Cleeland C, Coyle N, Dube JE, Ferrell B, Hassenbusch S 3rd, Janjan NA, Lema MJ, Levy MH, Loscalzo MJ, Lynch M, Muir C, Oakes L, OâNeill A, Payne R, Syrjala KL, Urba S, Weinstein SM. 2000. NCCN practice guidelines for cancer pain. Oncology (Huntingt) 14(11A):135â150.
196 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER Bickell NA, Young GJ. 2001. Coordination of care for early-stage breast cancer patients. J Gen Intern Med 16(11):737-742. Butow PN, Dunn SM, Tattersall MHN. 1995. Communication with cancer patients: Does it matter? J Palliat Care 11:34â38. Canadian Medical AssociationâSteering Committee on Clinical Practice Guidelines for the Care and Treatment of Breast Cancer. 1998. Follow-up after treatment for breast cancer. Canadian Medical Association Journal 158:565â570. Carlson RW, Anderson BO, Bensinger W, Cox CE, Davidson NE, Edge SB, Farrar WB, Goldstein LJ, Gradishar WJ, Lichter AS, McCormick B, Nabell LM, Reed EC, Silver SM, Smith ML, Somlo G, Theriault R, Ward JH, Winer EP, Wolff A. 2000. NCCN practice guidelines for breast cancer. Oncology (Huntingt) 14(11A):33â49. Cull A, Gould A, House A, Smith A, Strong V, Velikova G, Wright P, Selby P. 2001. Validat- ing automated screening for psychological distress by means of computer touchscreens for use in routine oncology practice. Br J Cancer 85(12):1842â1849. Department of Health and Human Services, CMS. 2002. HHS to Help States Create High- Risk Pools to Increase Access to Health Coverage. Press release, November 26, 2002. [Online]. Available: www.hhs.gov/news/press/2002pres/20021126a.html [accessed Janu- ary 31, 2003). Department of Health and Human Services. 2001. Medicare Part B Payments for Mental Health Services. Philadelphia: Department of Health and Human Services. Detmar SB, Aaronson NK, Wever LD, Muller M, Schornagel JH. 2000. How are you feeling? Who wants to know? Patientsâ and oncologistsâ preferences for discussing health-related quality-of-life issues. J Clin Oncol 18(18):3295â3301. Eakin EG, Strycker, LA. 2001. Awareness and barriers to use of cancer support and informa- tion resources by HMO patients with breast, prostate, or colon cancer: patient and pro- vider perspectives. Psycho-Oncology. 10(2):103-113. Edgar L, Remmer J, Rosberger Z, et al. 2000. Resource use in women completing treatment for breast cancer. Psycho-Oncology. 9(5):428-438. Fallowfield L, Ratcliffe D, Jenkins V, Saul J. 2001. Psychiatric morbidity and its recognition by doctors in patients with cancer. Br J Cancer 84(8):1011â1015. Frank RG. 2000. The creation of Medicare and Medicaid: The emergence of insurance and markets for mental health services. Psychiatr Serv 51(4):465â468. Gerrity MS, Cole SA, Dietrich AJ, et al. 1999. Improving the recognition and management of depression: Is there a role for physician education? J Fam Pract 48(12):949â957. Goff VV. 2002. Depression: A decade of progress, more to do. NHPF Issue Brief (786):1â14. Gold M, Achman L. 2001. Trends in premiums, cost-sharing, and benefits in Medicare+Choice health plans, 1999â2001. Issue Brief (Commonw Fund) 460:1â6. Goldman W, McCulloch J, Sturm R. 1998. Costs and use of mental health services before and after managed care. Health Aff (Millwood) 17(2):40â52. Hewitt M, Breen N, Devesa S. 1999. Cancer prevalence and survivorship issues: Analyses of the 1992 National Health Interview Survey. J Natl Cancer Inst 91(17):1480â1486. Holland JC. 1999. Update: NCCN practice guidelines for the management of psychosocial distress. Oncology 13(11A):459â507. Holland JC, Jacobsen PB, Riba MB. 2001. Distress management. Cancer Control 8(6):88â93. Institute of Medicine. 1990. Clinical Practice Guidelines: Directions for a New Program. Washington, DC: National Academy Press. Institute of Medicine. 1993. Access to Health Care in America. Washington DC: National Academy Press. Institute of Medicine. 1997. Managing Managed Care: Quality Improvement in Behavioral Health. Washington, DC: National Academy Press. Institute of Medicine. 2001. Coverage Matters: Insurance and Health Care. Washington, DC: National Academy Press.
BARRIERS TO USE OF PSYCHOSOCIAL SERVICES 197 Institute of Medicine. 2002. Care Without Coverage: Too Little, Too Late. Washington, DC: National Academy Press. Institute of Medicine. 2003. Leadership by Example: Coordinating Government Roles in Im- proving Healthcare Quality. Washington, DC: The National Academies Press. Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Im- prove the Quality of Cancer Care. Washington, DC: National Academy Press. Landerman LR, Burns BJ, Swartz MS, Wagner HR, George LK. 1994. The relationship be- tween insurance coverage and psychiatric disorder in predicting use of mental health services. Am J Psychiatry 151(12):1785â1790. Lee-Feldstein A, Feldstein PJ, Buchmueller T, Katterhagen G. 2000. The relationship of HMOs, health insurance, and delivery systems to breast cancer outcomes. Med Care 38(7):705â 718. Lerman C, Daly M, Walsh WP, Resch N, Seay J, Barsevick A, Birenbaum L, Heggan T, Martin G. 1993. Communication between patients with breast cancer and health care providers. Determinants and implications. Cancer 72(9):2612â2620. Levy MH, Weinstein SM, Carducci MA. 2001. NCCN: Palliative care. Cancer Control 8(6 Suppl 2):66â71. Liang W, Burnett CB, Rowland JH, Meropol NJ, Eggert L, Hwang YT, Silliman RA, Weeks JC, Mandelblatt JS. 2002. Communication between physicians and older women with localized breast cancer: Implications for treatment and patient satisfaction. J Clin Oncol 20(4):1008â1016. Maguire P, Tait A, Brooke M, et at. 1980. Effect of counseling on the psychiatric morbidity associated with mastectomy. Br Med J. 281(6253):1454-1456. Mandelblatt JS, Ganz PA, Kahn KL. 1999. Proposed agenda for the measurement of quality- of-care outcomes in oncology practice. J Clin Oncol 17(8):2614â2622. Matthews AK, Sellergren SA, Manfredi C, Williams M. 2002a. Factors influencing medical information seeking among African American cancer patients. J Health Commun 7(3):205â219. Matthews BA, Baker F, Spillers RL. 2002b. Healthcare professionalsâ awareness of cancer support services. Cancer Pract 10(1):36â44. McGivney WT, McGinnis L, Gansler TS. 2000. The NCCN/American Cancer Society partner- ship. Oncology (Huntingt) 14(11A):213â216. Mock V, Atkinson A, Barsevick A, Cella D, Cimprich B, Cleeland C, Donnelly J, Eisenberger MA, Escalante C, Hinds P, Jacobsen PB, Kaldor P, Knight SJ, Peterman A, Piper BF, Rugo H, Sabbatini P, Stahl C. 2000. NCCN Practice Guidelines for Cancer-Related Fa- tigue. Oncology (Huntingt) 14(11A):151â161. National Breast Cancer Coalition. 2002. Guide to Quality Breast Cancer Care. 2nd edition. Washington, DC: National Breast Cancer Coalition. National Comprehensive Cancer Network. 1999. NCCN practice guidelines for the manage- ment of psychosocial distress. Oncology (Huntingt) 13(5A):113â147. NCCN. 2003. Clinical Practice Guidelines for Management of Distress. Journal of the NCCN. National Coalition for Cancer Survivorship. 1995. Imperatives for Quality Cancer Care: Ac- cess, Advocacy, Action, and Accountability. Silver Spring, MD. National Mental Health Association. 2001. Americans Say Depression Is a Disease âNot a State of Mind,â but Stigma and Policy Impede Treatment. Alexandria, VA. Olfson M, Marcus SC, Druss B, Elinson L, Tanielian T, Pincus HA. 2002. National trends in the outpatient treatment of depression. JAMA 287(2):203â209. Parle M, Gallagher J, Gray C, Akers G, Liebert B. 2001. From evidence to practice: factors affecting the specialist breast nurseâs detection of psychological morbidity in women with breast cancer. Psycho-Oncology 10(6):503â510.
198 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER Passik SD, Dugan W, McDonald MV, Rosenfeld B, Theobald DE, Edgerton S. 1998. Oncologistsâ recognition of depression in their patients with cancer. J Clin Oncol 16(4):1594â1600. Payne DK, Hoffman RG, Theodoulou M, Dosik M, Massie MJ. 1999. Screening for anxiety and depression in women with breast cancer. Psychosomatics 40(1):64â69. Pignone MP, Gaynes BN, Rushton JL, Burchell CM, Orleans CT, Mulrow CD, Lohr KN. 2002. Screening for depression in adults: A summary of the evidence for the U.S. Preven- tive Services Task Force. Ann Intern Med 136(10):765â776. Redman S, Turner J, Davis C. 2003. Improving supportive care for women with breast cancer in Australia: The challenge of modifying health systems. Psycho-Oncology 12(6):521â 531. Roetzheim RG, Gonzalez EC, Ferrante JM, Pal N, Van Durme DJ, Krischer JP. 2000. Effects of health insurance and race on breast carcinoma treatments and outcomes. Cancer 89(11):2202â2213. Roetzheim RG, Pal N, Tennant C, Voti L, Ayanian JZ, Schwabe A, Krischer JP. 1999. Effects of health insurance and race on early detection of cancer. J Natl Cancer Inst 91(16):1409â 1415. Roter DL, Hall JA, Kern DE, et al. 1995. Improving physiciansâ interviewing skills and reduc- ing patientsâ emotional distress. A randomized clinical trial. Arch Intern Med 155(17):1877â1884. Schapira, L. 2003. Communication skills training in clinical oncology: The ASCO position reviewed and an optimistic personal perspective. Crit Rev Oncol Hematol 46(1):25â31. Sellers T. 2000. A model of collaborative healthcare in outpatient medical oncology. Families, Systems & Health 18(1):19â33. Smith TJ, Hillner BE. 2001. Ensuring quality cancer care by the use of clinical practice guide- lines and critical pathways. J Clin Oncol 19(11):2886â2897. Sofaer S, Davidson BN, Goodwan RD, et al. 1990. Helping Medicare beneficiaries choose health insurance: The illness episode approach. Gerontologist 30(3):308â315. Sorensen, M, Liu, ET. 1995. With a different voice: Integrating the psychosocial perspective into routine oncology care. Breast Cancer Res Treat 35(1):39â42. U.S. Census Bureau. 2002. Health Insurance Coverage: 2001. Washington DC: U.S. Depart- ment of Commerce, Economics and Statistics Administration. U.S. Department of Health and Human Services. 2000. Mental Health: Culture, Race, and Ethnicity: A Supplement to Mental Health: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health. Von Korff M, Gruman J, Schaefer JK, Curry SJ, Wagner EH. 1997. Collaborative manage- ment of chronic illness. Ann Intern Med 127:1097â1102. Wagner EH, Austin BT, Von Korff M. 1996. Organizing care for patients with chronic illness. Millbank Quarterly 74:511â544. Williams JW Jr, Pignone M, Ramirez G, Perez Stellato C. 2002. Identifying depression in primary care: A literature synthesis of case-finding instruments. Gen Hosp Psychiatry 24(4):225â237. Zabora JR. 1998. Screening Procedures for Psychosocial Distress. In: Holland JC, Breitbart W, eds. Psycho-Oncology. New York: Oxford University Press. Pp. 653â661. Zabora JR, Smith-Wilson R, Fetting SH, et al. 1990. An efficient method for psychosocial screening of cancer patients. Psychosomatics 31(2):192â196.