Executive Summary

More than 250,000 women in the United States hear the diagnosis of breast cancer every year. Most women will be cured by surgery, which no longer means a mastectomy in many cases. Additional treatment, designed to prevent a recurrence in the breast or spread of the cancer to other areas of the body, may be recommended at the time of diagnosis. This may include radiation therapy, chemotherapy, and hormonal therapy. More than 25 percent of women with breast cancer will die because the disease has spread beyond the breast and lymph nodes. Whereas breast cancer is curable when it is confined to the breast and regional lymph nodes, metastatic breast cancer is not curable. Women with breast cancer suffer psychologically not only from the diagnosis and initial therapy (with the resultant side effects) but also from the fear of recurrence and of dying of the disease.

This report on meeting the psychosocial needs of women with breast cancer was prepared by the Institute of Medicine (IOM) and National Research Council National Cancer Policy Board (the Board) and is based in part on a comprehensive workshop held at the IOM, October 28 and 29, 2002 (see Appendix A). The report is one of a three-part series from the Board on cancer survivorship, and it follows and builds on the Board’s 1999 report, Ensuring Quality Cancer Care, in which the Board concluded that psychosocial support services were an essential component of quality cancer care. The present report is intended to speak to stakeholders and policy makers in cancer care, to women with or concerned about breast cancer, and the interested general public.



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Meeting Psychosocial Needs of Women with Breast Cancer Executive Summary More than 250,000 women in the United States hear the diagnosis of breast cancer every year. Most women will be cured by surgery, which no longer means a mastectomy in many cases. Additional treatment, designed to prevent a recurrence in the breast or spread of the cancer to other areas of the body, may be recommended at the time of diagnosis. This may include radiation therapy, chemotherapy, and hormonal therapy. More than 25 percent of women with breast cancer will die because the disease has spread beyond the breast and lymph nodes. Whereas breast cancer is curable when it is confined to the breast and regional lymph nodes, metastatic breast cancer is not curable. Women with breast cancer suffer psychologically not only from the diagnosis and initial therapy (with the resultant side effects) but also from the fear of recurrence and of dying of the disease. This report on meeting the psychosocial needs of women with breast cancer was prepared by the Institute of Medicine (IOM) and National Research Council National Cancer Policy Board (the Board) and is based in part on a comprehensive workshop held at the IOM, October 28 and 29, 2002 (see Appendix A). The report is one of a three-part series from the Board on cancer survivorship, and it follows and builds on the Board’s 1999 report, Ensuring Quality Cancer Care, in which the Board concluded that psychosocial support services were an essential component of quality cancer care. The present report is intended to speak to stakeholders and policy makers in cancer care, to women with or concerned about breast cancer, and the interested general public.

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Meeting Psychosocial Needs of Women with Breast Cancer It is a timely communication since cancer treatment in general, and breast cancer treatment in particular, has moved from being delivered mostly in the hospital to the present situation in which treatments are given almost exclusively in the ambulatory care setting. Psychosocial services for women, which in the past, if available, were also largely hospital-based, have not been made available to the same extent in the new outpatient treatment areas. Consequently, a reassessment of the present accessibility, extent, and efficacy of psychosocial services for women with breast cancer is imperative. Breast cancer differs from many other cancers in that it is essentially limited to women, and it also has high incidence, good survival, and well-defined risk factors and screening technologies. Nevertheless, given the crosscutting nature of psychosocial distress in cancer, as defined below, the Board believes that much of the information gleaned from the study of breast cancer patients is also applicable to other cancer patient groups treated now in clinic settings. This report outlines the status of psychosocial interventions in general and suggests directions for research, delivery, and policy that may be appropriate to other sites of cancer as well as to breast cancer. Specifically, the report means to understand the impact of a diagnosis of breast cancer on a woman, her family and community, the psychosocial needs of such women, and the opportunities to provide support to them along the disease trajectory. The report addresses 5 questions: What is psychosocial distress, and how frequently does it occur among women with breast cancer at each stage? What interventions are available to treat psychosocial distress at all stages of disease, and how effective are they? What is the status of the delivery of psychosocial interventions and care to women with breast cancer? What barriers prevent women with breast cancer from getting psychosocial interventions and appropriate psychosocial care? What can be done to improve psychosocial care for women with breast cancer? What is psychosocial distress and how frequently does it occur? Distress in cancer has been defined as an unpleasant emotional experience that may be psychological, social, or spiritual in nature. Distress exists on a continuum beginning with the “normal” and expected feelings of fear, worries, sadness, and vulnerability in coping with cancer and its treatment. However, these normal feelings may extend to become more severe, even

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Meeting Psychosocial Needs of Women with Breast Cancer disabling, symptoms of anxiety or a formal diagnosis of major depression. Severe distress may relate to the illness or its treatment, a severe social problem, or a family problem, or it also may result from a spiritual or existential crisis created by confronting a threat to life (NCCN, 1999)1 or from the complications of treatment. Psychosocial issues and distress are logically likely mostly cancer site non-specific, but they have been most extensively studied among women with breast cancer. In particular, women with breast cancer have been examined for the impact on psychological function at each stage of disease and during survivorship. The studies show highest distress at transition points in treatment: at the time of diagnosis, awaiting treatment, during and on completion of treatment, at follow-up visits, at time of recurrence, and at time of treatment failure. Taken overall, around 30 percent of women show significant distress at some point during the illness, and the number is greater in women with recurrent disease whose family members are also distressed (see Chapter 3). What interventions are available to treat psychosocial problems and distress at all stages of disease and how effective are they? Interventions to address psychosocial problems and distress begin with basic information about the disease and treatment options from the breast cancer care clinician (often a medical oncologist). This clinician, regardless of medical specialty, should express support, encourage patients to voice their fears and concerns, encourage coping, and provide medication when needed to control symptoms like insomnia and anxiety. Psychosocial services should be provided by oncology caregivers as a part of total medical care, but referrals to specialists in psycho-oncology, social work, pastoral counselors, and other professionals may be necessary where the level of distress is high. The frequency of visits to a psycho-oncology professional may vary from a single encounter to several, and the timing and duration may also vary from very brief to extending over months or, at times, even years. Today, there are many community-based services available to women with breast cancer at no charge. Evidence from 31 randomized clinical trials, 1   The National Comprehensive Cancer Network (NCCN) is a not for profit, tax-exempt corporation that is an alliance of the world’s leading cancer centers. Established in 1995 to enhance the leadership role of member institutions in the evolving managed care environment, the NCCN seeks to support and strengthen the mission of member institutions in three basic areas: To provide state-of-the-art cancer care to the greatest number of patients in need; To advance the state of the art in cancer prevention, screening, diagnosis and treatment through excellence in basic and clinical research; To enhance the effectiveness and efficiency of cancer care delivery through the ongoing collection, synthesis and analysis of outcomes data.

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Meeting Psychosocial Needs of Women with Breast Cancer meta-analyses, and non-randomized studies supports the inclusion of psychosocial interventions in routine clinical care. This body of research documents that several psychosocial interventions reduce psychosocial problems and distress among women with breast cancer. Psychosocial factors and interventions are also related to other aspects of cancer such as pain and other side effects, as is discussed later in this report. What is the status of psychosocial care delivery? A number of cancer centers, institutions, and organizations (see below) have noted the importance of addressing cancer-related psychosocial concerns in the context of total care and explicitly recommend provision of adequate psychosocial services: However, the degree to which these recommendations are carried out is highly variable, and they are not monitored in any way to determine the quality of care in this area. National Cancer Institute (NCI)-designated comprehensive cancer centers; Institutions approved by the American College of Surgeons’ Commission on Cancer; Institutions belonging to the Association of Community Cancer Centers; and National Comprehensive Cancer Network members (standards of care and guidelines direct the management of psychosocial distress in patients with cancer). As discussed in Chapter 6, estimates are imprecise, but surveys suggest that perhaps 10 percent and at the most 30 percent of women with breast cancer have used psychosocial services (often of a relatively informal nature), although two-thirds of significantly distressed women indicate that they would accept services if they were routinely offered. Many women with breast cancer rely solely on family, friends, and clergy for social support. Some may find information and support on the Internet, for example, young survivors coalition, cancerandcareers.org, or the American Society of Clinical Oncology’s “People Living with Cancer.” Other women, however, do not have social supports built into their lives. They may also lack access to psychosocial services, either because care providers do not refer them to the available services or because of other barriers (e.g., no health insurance or no reimbursement for services).

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Meeting Psychosocial Needs of Women with Breast Cancer What barriers prevent women with breast cancer from getting appropriate psychosocial interventions and care? Several barriers impede appropriate care. The dramatic shift in the delivery of almost all cancer care from inpatient hospital to outpatient settings has not included a similar shift in the outpatient psychosocial services to the outpatient clinics and private oncology office practices. Increased complexity of care has limited access even further. Women with breast cancer usually see multiple specialists (e.g., surgeons, radiation oncologists, medical oncologists), and care is often not well coordinated. Fragmentation of care is an added psychological burden; the patient is not given care by a single, trusted physician. In addition, the outpatient offices and clinics are extremely busy; the length of time doctors can spend with patients is often limited, and the opportunity to bring up psychosocial problems may be lost. Receiving adequate information and the ability to ask questions in a comfortable way are basic needs for addressing psychosocial concerns. Breast cancer care occurs primarily in private office-based practices that routinely do not employ psychosocial professionals. Another barrier is the lack or inadequacy of health insurance coverage. An estimated 8 percent of women with breast cancer are uninsured, or, if patients are insured, there is coverage of mental health services with lower reimbursement levels or placement of mental health services in behavioral health contracts, separate from medical coverage. Still other barriers are the reluctance to discuss psychosocial concerns with the busy oncologist provider; the stigma associated with seeking or using mental health services; physicians’ failure to ask patients about distressing emotional symptoms; and the lack of simple, rapid instruments for screening for psychosocial distress (see Chapter 3). All are barriers to the symptoms receiving appropriate recognition, diagnosis and treatment by supportive and psychosocial services. Also, primary oncology teams in outpatient offices are often not familiar with clinical practice guidelines for managing psychosocial distress; they often work in environments that do not provide psychosocial services onsite; and they often are not aware of the psychosocial resources in their local communities. The situation is complicated additionally by the paucity in many communities of identified professionals with skills in managing psychosocial and mental health issues in patients with cancer. As part of a new initiative to help locate appropriate professionals, the American Psychosocial Oncology Society (APOS) now provides a Directory online (www.apos-society.org) and through a toll-free help line for patients and families (1-866-APOS-4-HELP). Overcoming barriers to appropriate use of psychosocial services will require advocacy, monitoring of psychosocial services through quality assurance programs to ensure compliance with standards of care, physician

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Meeting Psychosocial Needs of Women with Breast Cancer education, training in communication skills, and research relative to identifying and overcoming barriers. The Board understands that, in addition to these listed actions, appropriate use means that determinations of eligibility for psychosocial interventions ensure that women with breast cancer who neither want nor need these interventions are not subjected to them. Attending unnecessary sessions can be difficult for patients, a waste of time for both patients and therapists, and uneconomical. What can be done to improve psychosocial care for women with breast cancer? Board Recommendations The Board intends that the information contained in this report will be instructive in improving care for women with breast cancer in the ambulatory setting and will enhance understanding of psychosocial, psychiatric, and quality of life issues, the barriers to their appropriate management and routine inclusion in total care, and the range of interventions that are available to relieve distress. In addition, the Board hopes that the information will be helpful to women with breast cancer and to the public. Many of the psychosocial issues reviewed are likely relevant and applicable to other sites of cancer. The Board also has formulated some recommendations to be considered by policymakers and stakeholders responsible for breast cancer care. These are steps to improve the delivery of care, the knowledge and training of providers of care, and the research base that will lead to the development of a better understanding of psychosocial needs and better ways of addressing them. To improve clinical practice: 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 instruments are available to screen for distress, anxiety, depression, and quality of life. Quality of life instruments also can be used to identify function (psychological, social, physical, sexual) and to facilitate discussion of patient concerns, 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).

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Meeting Psychosocial Needs of Women with Breast Cancer Providers of cancer care should meet the standards of psychosocial care developed by the American College of Surgeons’ Commission on Cancer and follow the National Comprehensive Cancer Network’s (NCCN) Clinical Practice Guidelines for the Management of Distress. Education about psychosocial needs and services should be undertaken through collaboration between professional organizations and advocacy groups. The NCI, the American Cancer Society (ACS), and professional organizations (e.g., American Society of Clinical Oncology, American College of Surgeons, American Association of Colleges of Nursing, American Psychosocial 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, National 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 patients; these directories would identify the range of supportive services, from the free services of advocacy groups to services provided by mental health professionals. To improve professional education and training opportunities: Sponsors of professional education and training programs (e.g., NCI, ACS, ASCO, ONS, AOSW, ACS-CoC, APOS) should support continuing education programs by designing, recommending, or funding them at a level that recognizes their importance in psycho-oncology for oncologists, those in training programs, and nurses and for further development of programs similar to the ASCO program to improve clinicians’ communication skills; and Graduate education programs for oncology clinicians, primary care practitioners, nurses, social workers, and psychologists should evaluate their capacity to incorporate a core curriculum in psycho-oncology in their overall curriculum taught by an adequately trained faculty in psycho-oncology and to include relevant questions in examination requirements. There is a great need for continuing education and graduate education for clinicians and researchers in psycho-oncology. Research training in psychosocial oncology is needed to ensure the highest quality of clinical investigations. It is important to encourage graduates into the field by providing training opportunities such as postdoctoral fellowships. Additional clinical

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Meeting Psychosocial Needs of Women with Breast Cancer training programs are also needed to address the shortage of well-trained psychosocial clinicians. Nurses play a central role in providing cancer care and currently have limited oncology training. Psychosocial content could usefully be integrated into basic nursing education. To improve research opportunities: Research sponsors (e.g., NCI, ACS) and professional organizations (e.g., American Society of Clinical Oncology, American College of Surgeons, American Association of Colleges of Nursing, American Psychosocial Oncology Society, American Society of Social Work, American Society for Therapeutic Radiology and Oncology, Oncology Nursing Society) need to support efforts in collaboration with advocacy groups (e.g., National Breast Cancer Coalition; National Alliance of Breast Cancer Organizations) to enhance practice environments to promote coordinated, comprehensive, and compassionate care. Rigorous evaluations of the cost and effectiveness of delivery models that show promise in improving access to psychosocial support services are needed. These might include: Collaborative practices in which a psychologist or other mental health provider forms a partnership with an office-based oncology provider to make psychosocial services available within the oncology practice; Comprehensive breast cancer centers that generally integrate supportive care into a “one-stop-shopping” model of clinical practice; Breast cancer nurse managers who provide case management, education, and supportive care within oncology practices; Novel models of psychosocial services, such as ICAN project, in phase 2 demonstration, which utilizes master’s level counselors who receive a core curriculum in psychosocial oncology; Demonstration projects to test the effectiveness of clinical practice guidelines on the management of psychosocial distress in improving psychosocial outcomes; Development of measures of quality of cancer care that pertain to supportive care (including psychosocial services). Measures might include provider assessment of psychosocial concerns, the provision of information regarding community supportive care resources, and satisfaction with care. In general, investigators working in this field should recognize that studies in the past would in many cases have been stronger if they had been conducted using other than selected patients mostly in tertiary settings, or if the studies had not been unblinded, with small sample size, of insufficient power, of short duration, and other methodological shortcomings. Future study designs should try to minimize such weaknesses.

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Meeting Psychosocial Needs of Women with Breast Cancer Research sponsors (e.g., NCI, ACS) should continue to support basic and applied psycho-oncology research. This might include: Further development of simple, rapid screening tools for identifying the patient with distress in outpatient offices and training of primary oncology teams in diagnosis of distress that exceeds the “expected” and when referral to supportive services should be made; Studies that assess the relative effectiveness of various psychosocial interventions, using population-based patient samples of adequate size, the timing and duration of interventions, and innovative and inexpensive modes of administration (e.g., internet-based approaches); A consensus conference to develop a battery of standard instruments for outcome measures to permit comparison of data from studies carried out by different research groups; Organization of a psychosocial clinical trials group in which a network of researchers could address key questions in multi-center studies that would allow access to large, population-based samples; Clinical trials of psychosocial interventions that are conducted within routine breast cancer care in which cost and quality of life are outcome measures; A registry of ongoing psychosocial research/trials to assist researchers in identifying and tracking new areas of study. The NCI should support a special study to ascertain the use of, and unmet need for, cancer-related supportive care services (including psychosocial services) in the United States. The results of such a study could provide benchmarks against which care can be measured and performance monitored. Such a study would document existing disparities in service use by age, race/ethnicity, geography, and insurance coverage.

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