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6 Delivering Psychosocial Services I mportant advances in the diagnosis and treatment of breast cancer over the last quarter century have changed the makeup of the population of women surviving with breast cancer and dramatically altered how care is delivered, moving it from largely in-hospital to primarily ambulatory care. This chapter reviews the implications of these advances with respect to the prevalence and management of psychosocial distress. This chapter describes the structure and delivery of psychosocial services to women with breast cancer, including information on how services are delivered and the extent to which clinical and psychosocial services are integrated. Lastly, evidence is presented on how frequently women with breast cancer use psychosocial services. THE EVOLUTION OF BREAST CANCER CARE AND ITS IMPLICATIONS FOR THE PROVISION OF PSYCHOSOCIAL SERVICES Quality of life following a diagnosis of breast cancer is influenced by how and when the disease is diagnosed, the treatment, and the manner in which care is delivered. Breast cancer diagnosis, treatment, and care deliv- ery have evolved greatly in the past 25 years, altering the composition of the population of women living with breast cancer, the health status of survi- vors of the disease, and how care is delivered. In the area of diagnostics, the widespread use of mammographic screening has resulted in women being diagnosed at younger ages and with smaller tumors. The 20 to 30 percent decrease in mortality associated with mammographic screening has con- 133
134 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER tributed to a growing population of breast cancer survivors, estimated at 2.1 million women as of 1997. High screening rates have also resulted in more women being diagnosed with ductal carcinoma in situ (DCIS), a type of non-invasive breast cancer (see Chapters 2 and 3). In 2002, there were an estimated 47,700 women diagnosed with DCIS (54,300 with in situ cancer: lobular and ductal) (American Cancer Society, 2001, 2002). These women were not counted as among the 203,500 cases of invasive breast cancer, but because women with DCIS usually receive the same treatment as women with invasive early breast cancer, the rise in DCIS detection has increased the use of breast-cancer-related services and created a new cohort of women worried about their future risk of invasive disease. Research conducted in the 1980s and early 1990s demonstrating that breast-conserving therapy followed by radiation is an efficacious alterna- tive to mastectomy in most women has contributed to less disfigurement and reduced morbidity among women. This evolution in treatment has also reduced hospital stays and shifted care to outpatient settings. This trend has been accelerated with the dominance of managed care since the 1980s and efforts to reduce health-care costs. Mastectomy and other breast surgical procedures have been increasingly performed in outpatient day-hospital set- tings. According to one study, cancer-related complete mastectomies were rarely outpatient procedures in 1990, but by 1996, 8 percent of these proce- dures were outpatient in Connecticut, 13 percent were outpatient in Mary- land, and 22 percent were outpatient in Colorado. By 1996, 43 to 72 per- cent of cancer-related subtotal mastectomies were outpatient procedures in these states, and 78 to 88 percent of lumpectomies were performed on an outpatient basis (Case et al., 2001). The implication of this shift in site of care is that women cared for in outpatient settings no longer have access to the many supportive care personnel that are hospital-based, such as social workers, nurse educators, psychologists, and clergy. The move to outpa- tient care and shorter hospital stays also has implications for caregivers and families. Much of the assistance with post-surgery recovery and rehabilita- tion is now assumed by families rather than by nursing personnel. A greater reliance on pharmacological interventions for women with breast cancer follows findings that adjuvant systemic therapy reduces the risk of distant recurrence by about 40 percent and reduces mortality by 10 to 20 percent. New chemotherapeutic and hormonal agents have been in- troduced that are active in both early and metastatic breast cancer. These developments, while beneficial, have contributed to increased complexity of breast cancer care. Women treated for breast cancer in the 1960s would have typically been treated surgically with mastectomy in the hospital, with cancer care managed by a surgeon. In contrast, a woman with breast cancer today is likely to encounter a surgeon, radiation oncologist, and medical oncologist during her initial breast cancer treatment. With a number of
DELIVERING PSYCHOSOCIAL SERVICES 135 treatment options to consider, women have increasingly become active par- ticipants in their care and often seek second opinions regarding treatment options. The breast cancer advocacy movement has encouraged informed decision-making among women facing alternative treatment choices (Lerner, 2001; National Breast Cancer Coalition, 2002). The many steps along the trajectory of contemporary breast cancer (see Figure 4-1 in Chapter 4) and the multiple providers a woman encounters as she completes her care add to the complexity of cancer and highlight the need for care coordination. The complexity of care and the absence of coor- dination are often in themselves a source of psychosocial distress. The ques- tion of âWho is my doctor?â arises often and adds to the sense of vulner- ability and uncertainty. The evolving nature of breast cancer treatment has resulted in a hetero- geneous group of breast cancer survivors. Elderly survivors treated 20 to 30 years ago, for example, had fewer treatment options and likely experienced radical mastectomy. The issues of concern to those women were often linked to late effects of surgery such as lymphedema and body image. Younger cohorts of women, in contrast, have benefited from a wider range of op- tions, but may be concerned about a broader set of late effects related to their treatment. Among the late effects of contemporary breast cancer treat- ments are cognitive deficits, early menopause, heart conditions, and sexual dysfunction. During the late 1990s, many women with metastatic breast cancer underwent bone marrow transplantation, which was later shown not to be more effective than chemotherapy alone for advanced disease. Women who survived this treatment experienced not only the late effects but also the financial costs of this expensive procedure. Evidence emerged in the mid 1990s that there was no medical benefit of frequent specialized follow-up of women after initial breast cancer in terms of time to diagnosis of recurrence and quality of life (Rosselli Del Turco et al., 1994; The GIVIO Investigators, 1994). Prior to that time, women with breast cancer visited their surgeon or oncologist for as many as 10 years after diagnosis for history taking, physical examination, blood tests, imag- ing, and mammography. It was thought that women preferred specialized care and intensive follow-up after primary treatment, but according to a randomized controlled trial conducted in England in 1996, routine, less intensive follow-up care could be provided by primary care practitioners without compromising patient satisfaction (Grunfeld et al., 1999, 1996). Professional guidelines now recommend against extensive blood tests and imaging and encourage periodic physical examinations, mammography, and pelvic exams (www.PeopleLivingWithCancer.org). This plan for follow-up implies that primary care physicians and not oncology providers will be responsible for addressing long-term issues related to late effects and psy- chosocial distress. In the United States, however, follow-up by oncologists
136 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER continues as common clinical practice, driven perhaps by their availability and patient preferences, among other things. Women are still fearful about reduced frequency of visits and continue to believe that earlier diagnosis of recurrence is clinically important for a better outcome. THE STRUCTURE AND DELIVERY OF PSYCHOSOCIAL SERVICES TO WOMEN WITH BREAST CANCER Patterns of Breast Cancer Care Assessing how well psychosocial services are being delivered depends on knowing where women with breast cancer seek care and who provides that care. There are very few descriptions of cancer-related health care de- livery, but according to national population-based surveys, each year an estimated 4.8 million ambulatory care visits are made and 150,000 hospi- talizations occur for breast cancer care (Table 6-1). These sources do not provide a great deal of clinical data, making it difficult to distinguish pri- mary treatment from longer-term survivorship care. These data do provide rough estimates of who is getting care, where it is delivered, and some char- acteristics of care, for example, the source of payment for care. Information on ambulatory care comes from two large population- based surveys conducted by the National Centers for Health Statistics, the National Ambulatory Medical Care Survey and the National Hospital Am- bulatory Care Survey (NCPB special tabulations of NAMCS and NHAMCS, 1995â2000). Each year, data are collected on a sample of 20,000 to 40,000 visits to physiciansâ offices and a sample of 25,000 to 30,000 visits to hos- pital outpatient departments. Data are provided by physicians in their of- fices or by their office staff. Estimates of ambulatory care use are somewhat hampered by the exclusion of radiologists from the sampling frame of pro- viders (some cancer-related radiology care is identified from data from hos- pital outpatient departments). According to these two surveys, the vast majority of ambulatory care occurs in private practice settings, with 90 percent of visits made to physicianâs offices and 10 percent to hospital out- patient departments. Of the visits to physiciansâ offices, 52 percent are made to oncologists, 19 percent to general surgeons, 5 percent to specialty sur- geons, and 23 percent to specialists in medicine and primary care. Visits to hospital outpatient departments are most often to general medicine and surgery clinics. These findings suggest that efforts to improve the provision of psychosocial care should target oncology and surgery providers in pri- vate practice settings. Although 45 percent of new cases of cancer occur among women age 65 and older, more than half of cancer-related outpatient visits are made by women under age 65 (Table 6-2). This likely reflects the use of ambulatory
DELIVERING PSYCHOSOCIAL SERVICES 137 TABLE 6-1 Characteristics of Breast Cancer-Related Ambulatory Care Visits, by Site of Care, United States, 1995-2000 [preliminary data]a Annual Number of Visits Percent Characteristic (in 1,000s) Distribution Site of visit All visits 4,836 100.0 Physician office-based visits 4,353 90.0 Hospital outpatient department visits 483 10.0 Physician office-based visits All physicians 4,353 100.0 Oncology/hematology 2,252 51.7 General surgery 811 18.6 Specialty surgery 228 5.2 Medical specialty 327 7.5 Primary care 726 16.7 Hospital outpatient department visits All clinic visits 483 100.0 General medicine 396 81.9 Surgery 68 14.2 Other 19 3.9 aAnalyses of the National Ambulatory Medical Care Survey (NAMCS) and National Hos- pital Ambulatory Medical Care Survey (NHAMCS), 1995-2000. Breast cancer-related visits are those for which breast cancer (ICD-9-CM = 174) was recorded as the first, second, or third diagnosis associated with the visit. The sample size for breast cancer-related visits to physician offices was 904 and the sample size for visits to hospital outpatient departments was 1,169. SOURCE: NCPB staff analyses of NAMCS and NHAMCS. Physician office-based visits are visits made to non-federally-employed physicians (excluding those in the specialties of anesthesiology, radiology, and pathology) in private offices, non-hospital-based clinics, and HMOs. care services by cancer survivors, who as a group are younger than women who are newly diagnosed (incident cases). The age and racial/ethnic distri- bution of patients seen in physician offices and hospital outpatient depart- ments differs. Younger women and members of minority racial/ethnic groups are more likely to frequent hospital outpatient departments. Pa- tients seen in outpatient departments are also more likely to be uninsured or insured through the Medicaid program. Any effort to improve services to members of minority racial/ethnic groups could focus on these sites of care. Reasons for visits (as stated by patients) were similar by site. Generally, they were to monitor progress, to obtain breast cancer care and examina- tions, and to receive post-operative care. Patients visiting hospital outpa- tient departments are more likely to spend more time with the physiciansâ
138 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER TABLE 6-2 Characteristics of Breast Cancer-Related Ambulatory Care Visits, by Site of Care, United States, 1995-2000a Physician Office-Based Hospital Outpatient Visits Department Visits Characteristic (percent) (percent) Total number of visits 4,353,000 483,000 Percent 100.0 100.0 Age Less than 45 13.0 20.2 45 to 64 45.5 50.4 65 to 74 25.0 17.6 75 and older 16.5 11.8 Race/ethnicity White, non-Hispanic 86.3 76.5 White, Hispanic 4.7 7.3 Black 6.3 13.5 Other 2.6 2.7 Main source of payment Private insurance 59.8 57.6 Medicare 25.0 14.5 Medicaid 2.5 6.9 Other, unknown source 8.8 10.5 Uninsured (self pay/no charge) 3.9 10.6 Reason for visit (as reported by patient) Progress visit 14.3 19.5 Breast cancer care 13.2 18.1 General medical exam/breast exam 8.8 9.2 Post-operative visit 8.2 4.4 Chemotherapy 7.3 10.6 Medical counseling â 3.7 Radiation therapy â 2.5 Other 48.1 32.0 Time spent with doctorb Less than 15 minutes 20. 3 27.0 15 to 29 minutes 54.9 17.9 30 minutes and longer 24.7 55.1 Saw RN, PA, NP during visit Yes 37.7 59.6 No 62.3 40.4 Services provided during visit Mental health and psychotherapyc 4.8 5.3 Breast self exam instruction 50.0 34.5 Diet counseling/education 15.7 7.6 Exercise counseling/education 13.3 4.7 aAnalyses of the National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS), 1995â2000. Breast cancer-related visits are those for which breast cancer (ICID-9-CW=174) was recorded as the first, second, or third diagnosis associated with the visit. bTime spent with physician is not available in hospital outpatient clinics in 1995. cMental health was defined as general advice or counseling about mental health issues; education about mental disorders. Includes referrals to other mental health professional for mental health counseling. Physicians could also indicate provision of psychotherapy, psycho-pharmacotherapy, and stress management (included here). SOURCE: NCPB staff analyses of NAMCS and NHAMCS.
DELIVERING PSYCHOSOCIAL SERVICES 139 for more than half (55 percent) of visits, patients were seen for half an hour or longer as compared to 25 percent in physiciansâ offices. This may reflect the complexity of cases seen in outpatient departments, the provision of more extensive counseling, or the fact that many outpatient departments have teaching functions. Visits to outpatient departments are more likely than those made to physiciansâ offices to bring patients into contact with registered nurses, nurse practitioners, or physician assistants (60 vs. 38 per- cent of visits). According to these ambulatory care surveys, mental health- related services are rarely provided in the context of cancer-related care (in 5 percent or less of visits), and generally are less likely to be provided than counseling regarding breast self-exam, diet, and exercise. These estimates, may, of course, be artificially low if providers failed to document the provi- sion of counseling on the survey. In the past decade, comprehensive breast centers and breast care programs have been developed to put under one roof the many providers and services that a woman with breast cancer might need to make breast care simpler and to provide âone stopâ care. Typically, these programs employ social workers, clinical nurse specialists, or psychologists affiliated with them, who provide some form of systematic psychosocial intake or assessment, education, and counseling. Because the physical and the psychological impacts of the disease and treatment are often inter-related, having psychosocial services available within the breast care setting allows for the flow of patient-centered informa- tion to be shared among the center practitioners. For example, if a woman suddenly develops lymphedema of her arm, she will need a variety of physical interventions to address the problem, and she will need someone to assist her with the psychological distress that often accompanies this experience. Women understandably like the comprehensive breast care approach, and it appears to be gaining in popularity. However, it is not known what proportion of women receive care in these settings, but it is surely a small minority given that most visits are to a physicianâs office and the small number of comprehensive cancer centers and their uneven geographic distribution (Frost et al., 1999; Rabinowitz, 2002). Furthermore, while multidisciplinary care in breast clinics has gained wide acceptance in theory, in practice it can be a complicated situation. There can be economic constraints as well as turf issues among surgery, medical on- cology, and radiology, requiring that some sacrifices be made by at least one or two of these major players so that the patient may be best served. Specifically, this means that one or more of the three players may have to give up their turf and perhaps efficiency in working in the clinic. For example, a member of the treatment team may have to wait while patients move through a surgery clinic, some of whom are not diagnosed with breast cancer and therefore may not be in need of multidisciplinary collaboration. Collaboration can be limited if sala- ries are at stake and one member of the team stands to gain or lose money depending on how the clinic is managed.
140 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER Information on breast cancer-related hospital care is available from the National Hospital Discharge Survey (NHDS), a population-based survey conducted by the Centers for Disease Control and Prevention. Presented here are results of analyses of a sample of 1,850 discharges for which breast cancer was the primary diagnosis associated with the hospitalization (a to- tal of 613,719 hospital discharges [all causes] were in the combined sample from the 1999 and 2000 surveys). According to the NHDS, there were an estimated 106,600 United States hospitalizations annually with the associ- ated principal diagnosis of female breast cancer (Table 6-3). Half (50.1 percent) of the breast cancer-related hospital care was for women age 65 and older. Nearly two-thirds of breast-cancer-related hospitalizations were for mastectomy (65.2 percent), 7.2 percent for subtotal mastectomy, 10.1 percent for lumpectomy, and 17.5 percent are for other indications. Breast cancer-related stays in the hospital were relatively short, with 39.2 percent of women discharged within a day. As many as 7,500 women with breast cancer who were over the age of 75 were discharged from the hospital to their home within one day. The implications of this are that post-surgical care for elderly women, who are often frail and have other chronic illnesses, has to be managed at home, usually by family members and caregivers. Medicare is the predominant payer for hospital care, responsible for 45.0 percent of breast cancer-related discharges. One-in-five (22 percent) of dis- charges related to breast cancer care were from hospitals with fewer than 100 beds. This has implications for psychosocial care insofar as smaller hospitals are less likely to have extensive support service personnel immedi- ately available. This descriptive information on ambulatory and hospital care does not fully capture breast-cancer related care. Increasingly breast cancer surgical care is being delivered in free-standing ambulatory surgery centers. There are few sources of national data on care provided in these facilities. A na- tional survey of ambulatory surgery centers was conducted by NCHS in 1995, but it has not been repeated. As mentioned earlier, by 1996, roughly 10 to 20 percent of cancer-related complete mastectomies were outpatient procedures, 40 to 70 percent of subtotal mastectomies were outpatient pro- cedures, and 80 to 90 percent of lumpectomies were performed on an out- patient basis (Case et al., 2001). While much of the surgical care provided to women may be absent in the estimates above, it is likely that pre- and post-surgical consultations take place in ambulatory settings for which data are available and where psychosocial issues would most likely be addressed. PSYCHOSOCIAL SERVICE USE While evidence suggests that roughly 20 to 40 percent of women with breast cancer will exhibit psychosocial distress (see Chapter 3), it is not well
DELIVERING PSYCHOSOCIAL SERVICES 141 TABLE 6-3 Characteristics of Breast Cancer-Related Hospitalizations, United States, 1999â2000 Percent Characteristic Annual Number Distribution Total 106,600 100.0 Age Under 45 12,200 11.5 45â64 41,000 38.5 65â74 27,200 25.6 75 and older 26,100 24.5 Principal procedurea Mastectomy 69,500 65.2 Subtotal mastectomy 7,700 7.2 Lumpectomy 10,700 10.1 Other 18,700 17.5 Discharge status Routine/discharged home 93,500 87.8 Long-term care institution 3,900 3.7 Dead 2,000 1.9 Other 7,200 6.7 Length of stay 1 day 41,800 39.2 2 days 31,200 29.2 3 days 16,500 15.4 4 or more days 17,100 16.1 Main source of payment Medicare 47,900 45.0 Medicaid 6,000 5.6 Private 29,000 27.2 HMO/PPO 15,400 14.5 Uninsured 3,000 2.8 Other 5,300 5.0 Size of hospital (number of beds) 6â99 23,400 22.0 100â199 28,700 26.9 200â299 14,900 14.0 300â499 25,600 24.0 500 and over 14,000 13.1 Hospital ownership Proprietary 8,100 7.6 Government 11,200 10.5 Nonprofit 87,200 81.9 a lCD-9-CM codes for procedures: mastectomy (85.4), subtotal mastectomy (85.23), lumpectomy (85.21). NOTE: 1,850 of 613,719 sample hospital discharges were for women whose primary diagnosis was breast cancer (International Classification of Diseases, 9th Revision, Clinical Modification [ICD-9-CM] code 174).
142 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER understood how often women with breast cancer are referred for services, how accessible services are to women, and how often services are actually sought. Evidence from the field of mental health suggests that a majority of individuals with mental disorders do not receive mental health services (U.S. Department of Health and Human Services, 2000). According to one of the largest studies of mental health needs and service use, 28 percent of indi- viduals can be expected to have mental or addictive disorders in the course of a year, but only 15 percent of the population obtains services to address these disorders (U.S. Department of Health and Human Services, 2000). When mental health services are obtained, they are largely obtained in the health sector (either mental health specialty or general health sector). Other sectors such as human services or voluntary support networks are also im- portant providers of services. The National Coalition for Cancer Survivorship (NCCS), an advocacy organization, as a part of its published âImperatives for Quality Cancer Careâ stressed the importance of meeting the psychosocial needs of cancer survivors. The NCCS recommends that psychosocial services be provided for every person with cancer including (http://www.canceradvocacy.org): â¢ Availability of a psychosocial program and case manager who pro- vides assessment, education, support, and referral for services; â¢ Screening for psychosocial risk and in-depth individual and fam- ily assessments conducted on a regular and continuous basis across the disease spectrum by qualified psychosocial specialists and, in conjunc- tion with the medical plan, the development of a psychosocial treatment plan; â¢ A choice of intervention modalities including individual, family, mari- tal, peer, and pastoral counseling and access to complementary therapies; â¢ Training in cancer-related self-advocacy including information seek- ing, negotiation, communication, and problem-solving skills. The NCCS further recommends that the patient and the family be seen as the unit of care and receive: â¢ Culturally appropriate education about cancer, its treatment and side effects, and the necessary physical care responsibilities that need to be as- sumed by the patient and family; and â¢ Information about local, state, and national organizations that pro- vide support, education, and concrete services including how to access legal information and services for workplace, insurance and other cancer-related discrimination.
DELIVERING PSYCHOSOCIAL SERVICES 143 Judging how close the cancer care community is in meeting these goals is difficult because of a relative lack of information on the content of cancer care. The extent of psychosocial service use among women with breast can- cer is hard to gauge because of limited data from large representative samples and because survey and regional study data vary in different re- ports and time periods. The National Cancer Institute added a special supplement to the National Health Interview Survey (NHIS) in 1992 to assess issues related to cancer survivorship. The NHIS is a population-based survey of 49,401 households conducted by the National Center for Health Statistics, Centers for Disease Control and Prevention. According to this supplement, which sampled 24,040 households, only 14 percent of 656 individuals who had had any cancer (excluding non-melanoma skin cancer) within the past 10 years reported that they had received counseling or par- ticipated in a support group following their diagnosis (Hewitt et al., 1999). Among those who did not receive counseling, most (64 percent) felt that they did not need it, 12 percent did not want it, and 9 percent did not know that it was available. Another 15 percent said that they did not get counsel- ing for some other reason. Controlling for sociodemographic characteris- tics, women with breast cancer (and individuals with any cancer diagnosed more recently) were found to be twice as likely as those with other cancers to have received counseling or to have participated in a support group. More than a quarter (27 percent) of women with a history of breast cancer had received psychosocial services following their diagnosis (Hewitt et al., 1999). In a more recent analysis of data from the NHIS, cancer survivors (4,878) were more likely than individuals without a history of cancer to report using a mental health service within the past year (7.2 versus 5.7 percent) (Hewitt and Rowland, 2002). A mental health service was defined as contact with a mental health professional such as a psychiatrist, psy- chologist, psychiatric nurse, or clinical social worker. Participation in sup- port groups was not ascertained, and the reason for the mental health visit was not asked. Controlling for socio-demographic characteristics, cancer survivors without other chronic illness were 1.6 times more likely to use a mental health service, and cancer survivors with other chronic illness were 3.0 times more likely to use a mental health service as compared to those without cancer or other chronic disease. According to these results, based on 3 years of NHIS data (1998 to 2000), survivors of breast cancer were not more likely (6.3 percent) than survivors of other cancers to have used a mental health service (Hewitt and Rowland, 2002). This latter might seem at variance with the increased likelihood found in earlier surveys, but the intervention, mental health services for any reason, differed from cancer related counseling and support group participation as did the time period.
144 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER Information from regional studies confirms findings of relatively low mental health service use among women with breast cancer. According to a survey of 233 women (151 completed responses, 65 percent response rate) conducted at a regional breast care center in upstate New York and con- tacted within 3 years of their breast cancer diagnosis, relatively few had used formal psychosocial services. Only 15 percent of women had talked to a professional counselor (e.g., psychologist), 25 percent had participated in a support group, and the majority (60 percent) of women had talked to a friend who had breast cancer (Table 6-4), although there is overlap in these percentages. Of those who did not seek services, the majority did not feel it TABLE 6-4 Survey of Breast Cancer Patients Regarding Use of Psychosocial Services Sample Question Size Percent Since your diagnosis, have you talked to: A professional counselor (e.g., psychologist)? â¢ Yes 22 15.2 â¢ No, not necessary 95 65.5 â¢ No, but helpful 28 19.3 A volunteer counselor? â¢ Yes 42 29.4 â¢ No, not necessary 81 56.6 â¢ No, but helpful 20 14.0 A friend who had breast cancer? â¢ Yes 89 59.7 â¢ No, not necessary 42 28.2 â¢ No, but helpful 18 12.1 A âsupport groupâ? â¢ Yes 36 24.5 â¢ No, not necessary 78 53.1 â¢ No, but helpful 33 22.4 When was counseling most needed for you? â¢ Didnât need counseling 49 23.7 â¢ At time of diagnosis 85 41.1 â¢ During treatment 44 21.2 â¢ After treatment 29 14.0 Counseling services you would have been interested in the past: â¢ Talking to a professional counselor 55 23.7 â¢ Talking to a volunteer counselor (another woman with breast cancer) 84 36.2 â¢ Attending a monthly support group as necessary 45 19.4 â¢ Attending a professionally led group therapy program 48 20.7 NOTE: Cases do not always total 151 because of omitted responses and multiple responses. SOURCE: Trief and Donohue-Smith, 1996.
DELIVERING PSYCHOSOCIAL SERVICES 145 was necessary (Trief and Donohue-Smith, 1996). Women were more likely to report needing counseling at the time of diagnosis (41 percent), but a substantial proportion of women felt that counseling was needed during treatment (21 percent) and after treatment (14 percent) (Table 6-4). Among this sample, 28 percent reported a great deal of anxiety, and 14 percent reported a great deal of depression as they had coped with their illness. The percentage that experienced both a high degree of anxiety and depression was not reported, so it is not clear that the percentages can be summed to a level of distress of 42 percent. The authors concluded that although a siz- able minority of women need formal psychosocial services, many women work their way through the stressful periods using available support and their own coping skills. This conclusion is consistent with work of Worden and Weisman, investigators who developed a screening survey to identify cancer survi- vors at risk for poor coping and distress. Of 372 patients screened, 124 (33 percent) were found to be at risk and about half (60) accepted coun- seling. There did not appear to be any clear way to differentiate among those who did or did not accept counseling (Worden and Weisman, 1980). A German study conducted among 132 oncology outpatients (72 percent of whom had breast cancer) found that 28 percent participated in psychosocial support, with younger patients more likely to partici- pate (Plass and Koch, 2001). The main reason for not participating was sufficient support from family, friends, or doctors. In an Australian study involving 202 individuals (115 males) with cancer seen in an outpatient setting (all cancer sites), counseling was offered to 48 percent of patients but was only accepted by 28 percent of patients to whom it was offered. A frequently reported reason for refusal of services was ânot nowâ indi- cating that the offer of psychosocial services needs to be repeated (Curry et al., 2002). Relatively few long-term survivors of breast cancer continue to receive psychosocial support, according to a large cohort study of women con- ducted in Los Angeles and Washington DC. In this study of 5- to 10-year survivors, fewer than 13 percent of women reported that they were cur- rently using psychosocial or counseling therapies, while many more said that they had used them in the past. Only 6 percent of the women were currently in individual therapy. Only 5 percent were currently active in cancer support groups, although 30 percent said that they had used them in the past (Ganz et al., 2002). Other research points to an unmet need for psychosocial services. Ferrell and colleagues asked nearly 300 women, âWhat resources do you feel you did not receive and are most needed to improve QoL?â (Ferrell et al., 1998; Simmons, 1998). Respondents identified 9 resources related to psychoso- cial support that were lacking in their care:
146 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER 1. Support groups (peer-led, newly diagnosed, single women, long-term survivors) 2. Individual counseling 3. Family support 4. Education on delayed side effects 5. Management of menopause/hormone changes 6. Spiritual support 7. Support from/for spouse 8. Sexuality counseling 9. Support for fear of recurrence In summary, it is difficult to judge the extent of use of psychosocial services among women with breast cancer, but available evidence from na- tional surveys and regional studies of cancer patientsâ use and acceptance of psychosocial services suggests that: use is relatively low (perhaps 10 percent and at the most 30 percent, and often of relatively informal nature) (Ganz et al., 2002; Hewitt et al., 1999; Plass and Koch, 2001; Trief and Donohue- Smith, 1996; Worden and Weisman, 1980); it seems to diminish with time; and most individuals who refuse services want to cope using their own resources, or to receive help at another time. The Delivery of Psychosocial Services Psychosocial services can be delivered by primary care and cancer care providers, specialty providers such as mental health professionals (psycholo- gists and psychiatrists), advanced practice nurses, social workers, commu- nity-based programs, and increasingly by telephone or online computer services (see Chapter 4 for a description of psychosocial providers). Psycho- social services may or may not be integrated with breast cancer clinical care. Some settings such as comprehensive breast care centers have psycho- social providers on staff (Sorensen and Liu, 1995), while in other settings there are parallel systems for clinical and psychosocial care. This section describes examples of the delivery of psychosocial services in private prac- tice, a managed care setting, through community-based programs, and via computer. The examples are drawn from presentations of program pro- viders at the Boardâs October 2002 workshop (see agenda in Appendix A). Private Practice Most women receive their breast cancer care in community-based private practice settings. Psychosocial services may be provided by primary care phy- sicians or oncology providers in the context of clinical care, but relatively few
DELIVERING PSYCHOSOCIAL SERVICES 147 clinicians have psychologists or social workers available on site, unless they work in a large group practice or have a hospital-based practice. Physicians may refer individuals experiencing psychosocial distress to a local psycholo- gist or psychiatrist or to community-based support programs available through a local hospital or breast cancer group. A model that is infrequently used, but which holds promise for making psychosocial services more acces- sible to patients seen in private physiciansâ offices is âcollaborative practice,â which involves a psychologist in private practice regularly rotating to private oncology, primary care, and other practices (e.g., obstetrics/gynecology) to work in partnership with referring physicians. At the NCPB October 2002 workshop, the Board heard from Dr. Helen Coons, a psychologist in private practice who works collaboratively with a number of oncology care clinicians to provide psychosocial support ser- vices. Among the services that psychologists working in this fashion may provide are counseling related to treatment, depression, body image con- cerns, symptoms (e.g., hot flashes), sexual, reproductive and parenting is- sues, and substance abuse problems. Dr. Coons reported that commonly addressed issues in her practice include fears of recurrence, concerns about symptoms, anxiety, and adjustments at the end of life. Managed Care The majority of Americans receive their care within a managed care plan. Managed care can be defined as an entity that assumes both the clinical and the financial responsibility for the provision of health care for a defined population (Donaldson, 1998). With an increasingly complex health care system, a num- ber of types of managed care have emerged, and it is difficult to distinguish one type of managed care organization from another (Landon et al., 1998). There is no information regarding how psychosocial care is delivered within managed care plans across the country, but there are a few programs that have been described as improving the quality of breast cancer care, including patient sat- isfaction with care. The American Association of Health Plans recognized one supportive care program as exemplary; it is offered by one of its members, a large group-model HMO in Southern California (Geiger et al., 2000). The Southern California Kaiser Permanente Medical Group in collabora- tion with Womenâs Information Network Against Breast Cancer (WIN-ABC) improved patient satisfaction with care following the introduction of a breast cancer patient information and support program (Geiger et al., 2000). The program, called Breast Buddy Care Program, featured a coordinator, infor- mation resources, and mentoring from a breast cancer survivor. Following implementation of the program, participants were more likely than non-pro- gram respondents to be very satisfied with their care (71 percent versus 56 percent). Use of the program resources was relatively high, with 75 percent of
148 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER women using materials from the clinic-based library and 60 percent request- ing a patient mentor. Investigators estimate that the annual cost of a fully functioning program at a single hospital with several hundred new breast cancer cases annually would probably range from $25,000 to $75,000. Cancer Center-Based Programs Many women with breast cancer will receive at least some of their care within a hospital, either as an inpatient or when visiting an outpatient hos- pital-based practice or clinic. 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 Association of Com- munity Cancer Centers (ACCC). Of the two, the standards of the CoC affect more individuals with cancer because an estimated 82 percent of new cases of cancer are seen in the 1,428 hospitals approved by the CoC. Rela- tively few individuals with cancer are seen within the 47 NCI-designated comprehensive cancer centers, but these institutions are where many of the research, education, and training programs are located, making them im- portant models of care. This section of the report describes the availability of psychosocial services within hospitals that provide cancer care. The American College of Surgeonsâ Commission on Cancer The CoC sets stan- dards for quality multidisciplinary cancer care delivered primarily in hospitals, surveys hospitals to assess compliance with those standards, collects standard- ized and quality data from approved hospitals to measure treatment patterns and outcomes, and uses the data to evaluate hospital provider performance and develop effective educational interventions to improve cancer care outcomes at the national and local level (http://www.facs.org/dept/cancer/coc/cocar.html, accessed January 24, 2003). Selected standards of the Commission related to the provision of psychosocial care are shown in Box 6-1. The CoC had, by 2003, approved 1,428 cancer programs which, as mentioned earlier, are estimated to provide care for 82 percent of the nationâs newly diagnosed patients (http://www.facs.org/dept/cancer/coc/ whatis.html, accessed May 1, 2003). The Commission conducts extensive reviews of cancer programs through onsite visits at least every 3 years. Find- ings of the CoC survey are used as part of the Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) accreditation process for JCAHO-accredited organizations that house a cancer center. The col- laboration between the American College of Surgeonsâ CoC and JCAHO is an attempt to increase the visibility of approved cancer programs, share information on standards and survey process, and increase consumer access to performance information about health care organizations. CoC staff pro- vided information on supportive care services from institutions surveyed by
DELIVERING PSYCHOSOCIAL SERVICES 149 BOX 6-1 Selected Standards of the American College of Surgeonsâ Commission on Cancer Related to Psychosocial Services Cancer patients have access to rehabilitative, supportive, and con- tinuing care services. (standard 5.1.0) â¢ Education is provided for patients and their families through struc- tured programs. â¢ Referral to support services is available to patients and their fami- lies. â¢ A home care agency(ies) exists to provide professional services to patients and their families in the home. â¢ A clinical nutritionist works with patients and their families. â¢ Pastoral care services are available to meet the needs of patients and their families. â¢ A hospice program exists to provide professional and volunteer services to terminally ill patients and their families. â¢ Information and programs specific to survivorship issues are avail- able to patients with cancer and their families. Site-specific services are based on the needs of the patients (stan- dard 5.2.0). There is a multidisciplinary team approach to planning and imple- menting supportive and continuing care services (standard 5.3.0). â¢ A multidisciplinary recovery/rehabilitation team is in place. â¢ The team meets regularly. â¢ The team is an essential part of patient care. â¢ The team actively participates with families. Oncology services provide multidisciplinary care (standard 4.1.0). â¢ A multidisciplinary team approach is available (including a multimodality assessment of medical treatment, nursing interactions, nu- tritional, and psychosocial needs). â¢ Patients have access to the following care providers or services, either in-house or by referral: counseling, discharge planning, hospice care, nutritional care, oncology nursing, pain control, pastoral care, patient edu- cation, pharmacy, rehabilitation/support, social work, specialty physicians). â¢ The patient and families are assessed to determine physical, psy- chosocial, and spiritual needs; appropriate interventions and referrals are in evidence. â¢ Patient education and supportive care activities, comprehensive multidisciplinary discharge planning, and referral to community agencies and services are available. Nursing care is provided by nurses with specialized knowledge and skills in oncology (standard 4.8.0). SOURCE: American College of Surgeonsâ Commission on Cancer, 1997.
150 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER TABLE 6-5 Support Services Offered by Cancer Programs Approved and Surveyed by the American College of Surgeonsâ Commission on Cancer, 1999â2001 Programs Offering Service Servicea (N = 1170)b Support services: Number Percent Home care 1081 92 Hospice 1037 87 Nutritionc 869 74 Pain management 1081 92 Lymphedema rehabilitation 396 85 Providers: ONS certified nurses on staff 994 85 Physical/occupational therapist 455 98 Pastoral care 1152 98 Psychiatrist 1114 95 Psychologist 1062 91 Social worker 1155 99 Rehab therapist 1101 94 Stomal therapist 1082 92 Support activities: Breast cancer specific: Reach to Recoveryd 1048 90 Prostate cancer specific: Man to Mane 489 42 US Toof 304 26 Any cancer type: CanSurmountg 194 17 I Can Copeh 651 56 Other Support Groups 359 77 aServices may be available directly from the institution or by referral to appropriate resource. bCombinedsample results from CoC approved programs surveyed in 1999 (N = 325), 2000 (N = 380), and 2001 (N = 465). cIn 1999 13 percent of surveyed programs reported nutrition services as compared to 98 percent in both 2000 and 2001. This significant change could not be explained by CoC staff. dA support group sponsored by ACS for women with breast cancer. eA support group sponsored by ACS for men who are prostate cancer survivors. fUS TOO provides information, local support groups, counseling and educational meetings to assist people with prostate cancer as they make decisions about their treatment and con- tinued quality of life. gA program that puts a patient in touch with a person who has experienced the same kind of cancer. hA 7-week educational series for cancer patients and their families sponsored by ACS.
DELIVERING PSYCHOSOCIAL SERVICES 151 CoC during 1999, 2000, and 2001 (personal communication from Connie Blankenship, CoC, to Maria Hewitt, March 31, 2003). The information provided is self reported on the application forms completed by institutions in advance of their on-site survey (Table 6-5). At least some level of sup- portive care was available in the reporting sites, for example, social workers were available in 99 percent of programs, psychologists were available in 91 percent of programs, and the ACS Reach to Recovery was available in 90 percent of programs. Association of Community Cancer Centers Standards (ACCC) ACCC is a membership organization that includes 650 medical centers, hospitals, oncol- ogy practices, and cancer programs. The organization estimates that its mem- bers provide services to 40 percent of all new cancer patients in the United States (http://www.accc-cancer.org/about/, accessed January 24, 2003). The provision of psychosocial services is necessary to meet ACCC cancer program standards (Box 6-2) (http://www.accc-cancer.org/pubs/Standardstemp.html, accessed January 22, 2003). The ACCC revised its Standards for Psychoso- cial Services based on the NCCN standards (1999) and clinical practice guide- lines to note that psychosocial services should be provided by several kinds of professionals, all of whom should have training or experience in the psycho- social problems of patients with cancer (Standard 1). Standard 2 outlines the need for a multidisciplinary committee to tailor the standards to the needs of each clinical setting and to monitor programs to ensure accountability for undertaking recommendations and changes. Unlike the CoC, there is no for- mal review of compliance to these standards. National Cancer Institute-designated cancer centers The Cancer Centers Program of the NCI supports cancer research programs in 61 institutions across the United States (Figure 6-1) (http://www3.cancer.gov/cancercenters/ description.html). Although the support from NCI is mainly limited to sup- port of research infrastructure, all clinical and comprehensive cancer cen- ters also provide clinical care and services for cancer patients. Three types of centers are supported through the Cancer Centers Program: 1. Generic cancer centers have a narrow research that may focus, for example, on basic sciences; 2. Clinical cancer centers usually integrate strong basic science with strong clinical science; and 3. Comprehensive cancer centers integrate strong basic, clinical, and prevention, control, and population sciences. As shown by the map, large areas of the United States particularly the midsection of the country, are not near an NCI-designated cancer center.
152 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER BOX 6-2 Standards for Psychosocial Services, Association of Community Cancer Centers Standards for Cancer Programs Standard I Psychosocial services are provided by several disciplines in order to address the range of problems that patients and their families have as a consequence of cancer and its treatment. The disciplines are represented by social workers, nurses, psychologists, and psychiatrists, who are trained and skilled in the identification of psychological and social prob- lems and are able to work with the primary oncology team and assure triage of the patient to the appropriate resources for assistance and/or treatment. Standard II Psychosocial services, provided by the professional outlined above, will follow clinical practice guidelines that are both consensus and empiri- cally derived. A. Psychosocial services include, but are not limited to: 1. Social work services a) Patients and their families are evaluated and managed for prac- tical problems such as those which are illness-related as well as concrete needs such as housing, food, financial assistance, school, employment, language and cultural barriers. b) Patients and their families are evaluated and managed for their psychosocial problems, including family conflict/isolation, treatment decisions, quality of life issues and transitions in care, advance directives, domestic violence, coping/communication, and func- tional changes. A few studies have examined the availability of supportive care services in these cancer centers. Surveys of NCI clinical and comprehensive cancer centers conducted in the early 1990s indicate that virtually all of the re- sponding cancer centers offered group support programs (Coluzzi et al, 1995, Gruman and Convissor, 1995; Presberg and Levenson, 1993). In a more recent study conducted in 2000, about half of the NCI-designated comprehensive cancer centers (18 of 37 centers) had professionally led support groups for post-treatment cancer survivors (all 37 NCI-designated centers participated) (Tesauro et al., 2002). At the October 2002 NCPB workshop, a psychologist from the Com- prehensive Cancer Center of Wake Forest University/Baptist Medical Cen-
DELIVERING PSYCHOSOCIAL SERVICES 153 2. Mental health services a) Patients and their families are referred, evaluated and managed for psychological/ psychiatric problems and disorders, including demen- tia, delirium (encephalopathy), mood disorders, adjustment disorders, anxiety disorders, substance abuse and personality disorders. 3. Pastoral counseling services B. A multidisciplinary committee should be established to assume re- sponsibility for the quality of psychosocial services given, implementation of standards of care and quality assurance projects to assure that dis- tressed patients are identified and treated promptly and appropriately. C. The multidisciplinary committee should be responsible for assuring that qualified and trained professionals in each discipline are available to provide the multidisciplinary services, or that they are accessible by con- sultation. D. The multidisciplinary committee should develop methods for rapid screening of patients for distress, an algorithm to trigger referral for psy- chosocial services and to assure that the professionals utilize clinical practice guidelines developed for their discipline. E. Institutions, through their multidisciplinary committees, should under- take the educational efforts to inform staff and patients of the fact that psychosocial services are part of the total care provided and inform them of the procedures to obtain care. SOURCE: http://www.accc-cancer.org/pubs/Standardstemp.html, ac- cessed January 22, 2003. ter (an NCI-designated center) described its psycho-oncology program (R. McQuellon, workshop presentation, October 2002; McQuellon et al., 1996). The program provides individual and family counseling (inpatient and outpatient), support groups, new patient orientation, patient educa- tion, case consultation, veteran patient consultation, volunteer hospitality, and breast cancer risk assessment. Also available to patients are psychiatry, pastoral counseling, physical therapy, and other resources of the hospital/ medical school. To facilitate access to these services, resources have been located near outpatient treatment areas, for example in the hematology and oncology, radiation oncology clinics, and breast care center. The psychoso- cial needs of about 2,000 hospitalized cancer patients and nearly 5,000
154 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER Cancer Center (8) Clinical Cancer Center (14) Comprehensive Cancer Center (39) Planning Grant (6) FIGURE 6-1 NCI-supported cancer centers. SOURCE: http://www3.cancer.gov/cancercenters/description.html, accessed January 24, 2003. individuals seen in outpatient clinics are met by 4 professional staff. The program is heavily dependent on a group of trained volunteers (about 20 per week participate in care) to extend services. Financial support comes largely through an annual fund raiser (60 percent), Wake Forest/Baptist Medical Center (20 percent), grants (10 percent), fee for service (5 percent), and donations (5 percent). According to the program director, this reliance on private donations and volunteer support is typical of such hospital-based programs. Psychosocial services for cancer patients have become more constrained due to increasing financial pressures in the health-care setting. Social work departments have contracted as hospital resources have diminished, and in many clinical settings these services only exist through philanthropic sup- port. Under these circumstances, it is only the most needy patients who receive attention for the psychosocial issues associated with their breast cancer experience.
DELIVERING PSYCHOSOCIAL SERVICES 155 Community-Based Support There are psychosocial services for women with breast cancer available through voluntary organizations, many of them at no cost. Table 6-6 de- scribes some of the programs that are available nationally. Among the ser- vices these programs offer are peer support, individual counseling by tele- phone, information on nutrition and exercise, and assistance with appearance, for example, wigs and breast prostheses. This section of the report highlights programs represented at the October 2002 NCPB work- shop, those offered by the American Cancer Society, the Wellness Commu- nity, and a few programs that focus on the needs of Hispanic and African American women with breast cancer. American Cancer Society Programs The American Cancer Society sponsors several programs for women with breast cancer (see Table 6-6). The Reach to Recovery program, offered since 1960, provides peer support to women with breast cancer. Initially designed for women after mastectomy in hospi- tals, the program is now offered largely in the community. Attempts are made to match peer counselors with women with cancer by age, type of procedure, and cancer stage. There were 75,000 to 80,000 visits made by 16,000 trained volunteers in 2000. Road to Recovery is an outgrowth of this program that provides rides to individuals with cancer who need trans- portation to treatment. There are no national estimates of how many people use this program; however, in Massachusetts about 35,000 trips were made in recent years as part of this program. Since 1989, the Look Goodâ¦Feel Better (LGFB) Program has provided assistance with makeup, skincare, and other aspects of appearance (e.g., consultation on wigs, turbans). The program is co-sponsored by the Cos- metic, Toiletry, and Fragrance Association Foundation and the National Cosmetology Association. In recent years the LGFB program has reached 43,000 women. A magazine and catalogue called âtlc,â or Tender Loving Care, combines articles and information about products for women coping with cancer treatment (e.g., wigs, mastectomy forms and products, hats and headcoverings, bathing suits, and lingerie) (www.tlccatalog.org, accessed April 15, 2003). The I Can Cope program started as a series of classes for individuals with cancer, but has been adapted for use for discussion groups and most recently as a Web-based interactive program. The Cancer Survivors Network is an ACS-sponsored website to support online interaction between cancer survi- vors. Participants can create a personal website, post pictures, poems and other expression, and engage in online discussions in English, Spanish, and Chinese. A health-care navigator program is under development by ACS that will direct individuals to resources within their community.
156 TABLE 6-6 Selected National Community-Based Psychosocial Resources Program Name, Sponsor Services and Availability Content of Services Patient Eligibility Reach to Recovery, American Cancer, â¢ One-on-one peer support and education â¢ Emotional support from cancer survivor Women facing breast Society (ACS) (in-person or by telephone) â¢ Educational materials for patient and family cancer diagnosis, patients (www.cancer.org) Available nationwide â¢ Assistance obtaining prostheses Self or doctor referral I Can Cope, ACS â¢ Series of classes taught by doctors, nurses, social â¢ Diagnosis, treatment, side effects of treatment Cancer patient and/or workers, and other health care professionals or â¢ Emotions and self-esteem, cancer and intimacy family community representatives â¢ Communication skills Self or doctor referral â¢ Focus on reliable information, peer support, and â¢ Community resources, financial concerns practical coping skills â¢ Pain management Available nationwide â¢ Nutrition Look Good . . . Feel Better, â¢ Information and hands-on instruction on â¢ Teaching women how to cope with the Patient concerned about ACS, Cosmetic, Toiletry, and Fragrance makeup and skincare and suggestions for using appearance related side-effects of cancer appearance-related side Association Foundation, and the National wigs, turbans, and scarves. â¢ Enhancing appearance and make-over effects of cancer Cosmetology Association â¢ Learning to use wigs, hair pieces, turbans, etc. (www.lookgoodfeelbetter.org) Available nationwide The Wellness Community, Donations from â¢ Weekly cancer support groups â¢ Emotional support Cancer patient and/or individuals, corporations, or foundations â¢ Diagnosis specific support groups â¢ Coping strategies family â¢ Family/caregiver groups â¢ Relaxation/visualization training â¢ Bereavement groups â¢ Cancer information/education â¢ Online support groups â¢ Cognitive-behavioral techniques â¢ Nutrition/exercise, mind/body programs â¢ Exercise techniques â¢ Physician lectures â¢ Nutritional guidance â¢ Stress reduction workshops â¢ Principles of Patient Active Concept (combo of Available in 22 locations throughout the U.S. psychology and PNI)
Cancer Care â¢ One-on-one counseling â¢ Emotional support and encouragement Cancer patient â¢ Group Therapy â¢ Psychological counseling from social worker â¢ Cancer information/education â¢ Teleconferences for cancer information â¢ Group peer support via telephone or internet Available nationwide by telephone â¢ Financial advice and assistance Cancer Hope Network â¢ One-on-one peer support via telephone or â¢ Emotional support and encouragement from Cancer patient in person cancer survivor Available nationwide by telephone, or in person at some locations ACOR (Association of Cancer Online â¢ Group discussion and peer support â¢ E-mail list-servs, networks, and chatrooms for Cancer Patient and/or Resources) â¢ Information specific cancersites and common interests family Available nationwide via the Internet monitored by healthcare professionals â¢ Information Resources Other groups (Y-Me, Bosom Buddies, â¢ Group therapy â¢ Emotional support Cancer patient and/or Sisters Network, YWCA, Circle of â¢ Group psychotherapy family Life, TOUCH) Available in regions nationwide â¢ Coping strategies 157
158 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER The Wellness Community The Wellness Community, founded in 1982, pro- vides free education and support services to individuals with cancer and their families (see Table 6-6). The founding principle of the Wellness Com- munity is that patients who participate in recovery improve the quality of their lives and may enhance the possibility of recovery. In 2002, 25,000 patients made 150,000 visits to Wellness Community Programs located in 22 sites across the country (Wellness Community Fact Sheet, undated). Among those served were 8,000 women with breast cancer, 3,000 of whom joined support groups (Mitch Golant, workshop presentation, 2002). All programs are facilitated by health care professionals, including social work- ers, psychotherapists, nurses, and psychologists, and all programs and train- ing curricula are uniform throughout the country. Its newest program, The Virtual Wellness Community, includes online support groups, Webcasts, mind/body exercises, and information (see Figure 6-2). Evaluations of pro- grams are ongoing in collaboration with investigators at Stanford Univer- sity and the University of California at San Francisco (Lieberman et al., 2003). A comparison of face-to-face and online support services, an exami- nation of provider best practices, and analyses of outcomes associated with interventions are among the research activities that are underway. FIGURE 6-2 The virtual wellness community. SOURCE: http://www.thewellnesscommunity.org.
DELIVERING PSYCHOSOCIAL SERVICES 159 Community-based support targeted to racial and ethnic minority groups A number of psychosocial support programs are targeted to members of ra- cial and ethnic minority groups. La Vida, a program to meet the needs of Hispanic women in the District of Columbia, was described at the October 2002 NCPB workshop. Established in 1996, La Vida offers support groups, crisis intervention, and peer support to breast cancer survivors. Because many women served are poor, uninsured, and speak Spanish, La Vida pro- vides âpatient navigationâ services to help women make appointments and get appropriate follow-up care, assistance with health insurance applica- tions and claim translation, and social supports (assistance with transporta- tion, babysitting). Support groups focus on stress reduction, education (e.g., nutrition), and the implications of cancer for families. La Vida is creating a national psychosocial support resource directory for Hispanic women with breast cancer. To date, 63 programs have been identified, many in Califor- nia and New York (Hinestrosa, workshop presentation, October 2002). The most pressing needs of Hispanic women identified by programs sur- veyed thus far are related to poor access to health care, information, psy- chosocial support, and difficulties navigating the health care system. Sisterâs Network was founded in 1993 to address the needs of African American women with breast cancer (www.sistersnetworkinc.org, accessed April 15, 2003). The only national African American breast cancer survi- vors organization in the United States, Sisters Network has 35 affiliate chap- ters across the country. Over 2,000 members are involved in breast health training, attending conferences, and serving on various national boards and review committees. Chapters offer individual and group support, commu- nity education, advocacy, and research-related activities (e.g., promoting access to clinical trials). Support available by telephone and online Many psychosocial support ser- vices are available by phone to residents of rural areas and those living far from cancer centers, and increasingly online through the World-Wide Web. This section of the report describes three such programs: Cancer Care, The Association of Cancer Online Resources (ACOR), and CHESS (Compre- hensive Health Enhancement Support System). A new resource is able to help find psychosocial and mental health services: The American Psychoso- cial Oncology Society (APOS; http://www.aspboa.org/patient/default.asp. There are other organized online lay information and support groups, for example, FertileHope.org, Living Beyond Breast Cancer (lbbc.org), and cancerandcareers.org, and many Internet chat rooms. There are also radio resources, for example, the Group Room weekly cancer talk radio show (and Internet simulcast) provided by Vital OptionsÂ® International, which could reach those in rural and other distant areas. The potential for these
160 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER resources to help survivors and to serve as collaborators in psychosocial care and research is not clear but merits investigation. Cancer Care Since 1944, Cancer Care has provided emotional sup- port, information, and practical help to people with cancer and their fami- lies. This nonprofit social service agency takes calls through its toll-free Counseling Line, sponsors teleconference programs, and provides support services on site in New York and via the Internet (www.cancercare.org, accessed April 15, 2003). All services are provided free of charge. With a staff of more than 50 professional oncology social workers, Cancer Care in 2001 provided services to more than 80,000 people. Among the services provided are individual and family counseling, group counseling (in-person, online, or by telephone), referrals to other resources, direct financial assistance, and teleconference programs which allow people to listen via telephone to experts in oncology or related fields discuss state-of-the-art treatment options, provide coping strategies for side effects, make recom- mendations on communicating with oneâs healthcare team, and offer advice on how best to maintain quality of life while living with cancer. Cancer Care is also involved in professional education and training offering semi- nars, workshops, and teleconferences in all fields of oncology care. Dis- tance learning programs are conducted entirely on the website. The Association of Cancer Online Resources (ACOR) ACOR provides opportunities for individuals with cancer to interact with other cancer pa- tients, therapists, or doctors through chat rooms, e-mail, or listserves. Psy- chosocial support is available through listserves dedicated to breast cancer, cancer-related depression, and caregivers. Another feature of ACOR is the provision of information about cancer from sources deemed to be credible (www.acor.org, accessed April 15, 2003). CHESS (Comprehensive Health Enhancement Support System) CHESS provides information, social support, and decision-making assistance via a personal computer and modem that are placed in patientsâ homes. Women of all ages and varied socioeconomic backgrounds have successfully used the program to become active participants in their care following a diagno- sis of breast cancer. CHESS allows participants to talk anonymously with peers, question experts, learn where to obtain help and how to use it, read stories about people who have survived similar crises, read relevant articles, monitor their health status, consider decision options, and plan how to implement decisions (Gustafson et al., 1993; Shaw et al., 2000). Support group use is the most popular aspect of CHESS. CHESS support groups are monitored by a facilitator. Several major medical centers and health plans are involved in CHESS research dissemination (http://chess.chsra.wisc.edu/ chess/consortium/consortium_members.htm, accessed April 15, 2003). American Psychosocial Oncology Society (APOS) Members of APOS include professionals from all disciplines who are involved in providing
DELIVERING PSYCHOSOCIAL SERVICES 161 psychosocial and mental health services for cancer patients and their fami- lies. Established in 1986, APOS has recently addressed the information gap for patients whose psychosocial needs are not met by the services of the advocacy organizations and who are in need of more formal mental health services. The APOS Referral Directory (available online at www.apos- society.org, accessed April 15, 2003) and their toll-free number (1-866- APOS-4-HELP) provide patients and their families with information about qualified professionals with skills in psycho-oncology and who are located in their community. In addition, APOS offers a core curriculum in psycho- oncology, free online, to professionals who wish to ensure their basic skills in the psychosocial care of patients. APOS presently serves as backup to Cancer Care, The Wellness Community, and the National Coalition of Can- cer Survivors (NCCS). SUMMARY Advances in breast cancer diagnosis and care have changed the compo- sition of women with breast cancer and the way in which they receive care. Widespread use of mammography has, for example, led to women being diagnosed at younger ages, which likely has increased the need for psycho- social services because younger people, in general, report higher rates of mental problems, and their mental health service use tends to be high. There have been dramatic shifts in the site of breast cancer care, from the hospital to outpatient settings, making access to psychosocial support services more difficult because psychologists, social workers, and nurses, the mainstays of psychosocial care, are usually based in hospitals. While evidence is limited, it appears unlikely that most women with breast cancer receive hospital care of any duration. There are only about 150,000 hospi- talizations for breast cancer each year, with two-thirds of these hospitaliza- tions for mastectomies. And among women hospitalized for breast cancer care, relatively few stay in the hospital longer than 2 days. Most contemporary breast cancer care takes place during nearly 5 mil- lion ambulatory care visits made annually, most of these to private physi- ciansâ offices. Here, only 5 percent of breast cancer-related visits include psychosocial care. Contact with nurses who might be expected to provide some supportive care appears to be limited during visits to physiciansâ of- fices, with fewer than 40 percent of visits bringing women seeking breast cancer care into contact with a registered nurse, nurse practitioner, or phy- sician assistant. Use of psychosocial services may be limited because the delivery of breast cancer care has become so complex, involving multiple treatment modalities and providers. As women go from office to office for consulta- tion and treatment, there may be no coordinator of care and no one respon-
162 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER sible for making the patient aware of psychosocial services that are avail- able. Comprehensive breast centers have emerged that put providers and services âunder one roof,â but there are no estimates of the number of women receiving care in these settings. The involvement of oncology providers in post-treatment follow-up care has been questioned by findings, largely outside the United States, that spe- cialized surveillance has no benefit for survival or patient satisfaction. Long term follow-up of women with breast cancer may eventually move to the hands of primary care providers, who may not have extensive experience in cancer-related psychosocial issues or the expected long-term treatment ef- fects with psychosocial consequences. Collaborative practice is a promising approach to providing psychoso- cial services to the vast majority of women with breast cancer who receive their care in ambulatory care settings. This approach involves integrating a psychologist (usually in private practice) into the outpatient oncology prac- tice team; however, current reimbursement for mental health services can- not fully support a salary for such a person. Managed care programs that improve satisfaction with breast cancer care by enhancing educational ma- terials and supportive care also show promise. Although a minority of women appear to be getting breast cancer care in hospital-based settings, these programs are important sites of training and research. Many hospital- based programs have standards in place to assure the provision of at least some level of psychosocial support. Hospital-based programs, however, even at comprehensive cancer centers appear to have unstable support for their programs, relying extensively on philanthropy and volunteer staff. There are many free, community-based psychosocial programs available and increasingly services are accessible by telephone and the Internet. Little is known regarding their use, and few have been formally evaluated. There are few estimates with which to gauge how often women with breast cancer use psychosocial services, but generally use appears to be low, with up to 30 percent of women reporting some level of service. Psychoso- cial service use seems to decline into the survivorship period, with some studies suggesting that between 10 and 15 percent of long-term breast can- cer survivors use psychosocial services. REFERENCES American Cancer Society. 2001. Breast Cancer Facts & Figures 2001â2002. Atlanta: Ameri- can Cancer Society. American Cancer Society. 2002. Cancer Facts & Figures 2002. Atlanta: American Cancer Society. Case C, Johantgen M, Steiner C. 2001. Outpatient mastectomy: Clinical, payer, and geo- graphic influences. Health Serv Res 36(5):869â884.
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