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1 Introduction A n estimated 251,200 women were diagnosed with invasive and in situ breast cancer in 2002 (American Cancer Society, 2002). For most of these women, initial feelings of shock, disbelief, and dis- tress were followed by physical recovery and a return to good psychological health. A small group of women, however, had lingering and sometimes disabling psychological problems following their diagnosis. Most of these women lived to join the more than 2 million survivors of breast cancer, but may experience episodic or persistent distress. Nearly 40,000 women died of breast cancer in 2002, some of whom experienced poor coping, with inadequate support at the end of life. Of course, the number of people affected by these psychological problems is much greater than the number diagnosed and includes family, friends, and others in the community. The recognition and study of the psychological consequences of the cancer experience is the subject of the discipline of psycho-oncology, a field that emerged as a distinct discipline in the mid 1970s. For the first time, cancer, once a taboo topic, could be discussed openly, and more patients became willing to share their feelings and experience and participate in studies. Breast cancer has been the most extensively studied cancer from the standpoint of psychosocial sequelae, dating back to the mid-twentieth cen- tury, and remains the paradigm for the field (Shapiro et al., 2001). In this report, the National Cancer Policy Board reviews the now- extensive psycho-oncology literature to inform policy decisions regarding the delivery of compassionate breast cancer care. The purpose of this re- port is to: 11
12 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER â¢ characterize the psychosocial consequences of a diagnosis of breast cancer, â¢ evaluate the effectiveness of services to alleviate psychosocial dis- tress, â¢ assess the status of psychosocial interventions in the context of con- temporary breast cancer care, â¢ assess the status of professional education and training and applied clinical and health services research, and â¢ propose policies to improve the quality of care and quality of life for women with breast cancer and their families.1 Individuals with cancer may have cancer-specific concerns, such as fear of cancer recurrence, and generalized symptoms such as worry, trouble sleeping, fatigue, and anxiety about going to the doctor. Underlying mental illness may also be exacerbated by the experience of being diagnosed with cancer or living with the disease. To capture the broad range of concerns of individuals with cancer, the Board, in this report, has relied on the defini- tion of âpsychosocial distressâ from the National Comprehensive Cancer Network. âWe have defined âdistressâ as it applies to cancer, as follows. Distress is an unpleasant experience of an emotional, psychological, social, or spiritual nature that interferes with the ability to cope with cancer treat- ment. It extends along a continuum, from common normal feelings of vul- nerability, sadness, and fears to problems that are disabling, such as true depression, anxiety, panic, and feeling isolated or in a spiritual crisisâ (NCCN, 1999: 114). ROLE OF THE NATIONAL CANCER POLICY BOARD The National Cancer Policy Board (the Board) was established in March 1997 at the Institute of Medicine (IOM) and National Research Council with core support from the NCI and CDC to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. The 20- member board includes health-care consumers, providers, and investigators in several disciplines (see membership roster). This report is one of three reports that comprise a Board initiative to address issues of concern for cancer survivors, with an emphasis on what happens following the primary treatment of cancer. The first report in that series, Childhood Cancer Survi- 1Excluded from this review are the small number of men with breast cancer and healthy women who are at high-risk for breast cancer because of their genetic makeup or family history. The Board recognizes that each of these groups have unique health and psychosocial needs, but elected not to cover them in this report. The Board hopes in future reports to examine issues related to genetic testing and cancer.
INTRODUCTION 13 vorship: Improving Care and Quality of Life, was published in 2003, and the final report on adult survivorship is expected in 2004. These reports (and others) follow and build on the Boardâs 1999 report, Ensuring Quality Cancer Care, which recommended strategies to promote evidenced-based, comprehensive, compassionate, and coordinated care throughout the cancer care trajectory. In that report, the Board recommended that individuals have access to psychosocial support services; the reportâs focus, however, was on primary treatment, and it did not extensively address issues related to the psychosocial needs of individuals with cancer (Institute of Medicine and National Research Council, 1999). Like its predecessors, this report speaks to stakeholders and policy mak- ers in cancer care, to women with or concerned about breast cancer, and to the interested general public. This in-depth examination of cancer-related psychosocial issues is based, in part, on a 2-day IOM workshop held Octo- ber 28â29, 2002, âMeeting Psychosocial Needs of Women with Breast Can- cerâ (see the workshop agenda in Appendix A). In addition to the Boardâs core support, the workshop and this report were made possible by a gener- ous grant from the Longaberger Company through the American Cancer Society. Two papers commissioned for the workshop were essential to this report, one by Dr. Patricia A. Ganz, on the assessment of psychosocial dis- tress in clinical practice, and the other by Dr. Pamela J. Goodwin, a review of literature on the effectiveness of psychosocial intervention for women with breast cancer.2 The Board decided to focus on breast cancer largely because of the robust literature and extensive experience in this area. The Board, however, considers breast cancer a paradigm and suggests that the policy recommen- dations in this report are applicable to the psychosocial care provided gen- erally to individuals with cancer. FRAMEWORK OF THE REPORT The report consists of several background chapters (Chapters 2â8) that summarize evidence that the Board used in formulating its recommendations, presented and discussed in the Executive Summary and Chapters 4, 7, and 8. Chapter 2 reviews the epidemiology of breast cancer to characterize the group of women at risk for psychosocial distress. Chapter 3 characterizes the psychological and social consequences of a diagnosis of breast cancer, the frequency of psychosocial distress, and the availability of assessments tools to help health-care providers identify women who may benefit from psychosocial interventions. 2These papers are available at www.IOM.edu/ncpb.
14 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER Chapter 4 presents a brief description of the range of psychosocial in- terventions that are available, the sites in which they are offered, the pro- viders who offer them, and psycho-oncology education and training oppor- tunities for health-care providers. Chapter 5 reviews the effectiveness of psychosocial interventions with an emphasis on evidence from randomized clinical trials. The chapter con- cludes with a discussion of outstanding research issues that need to be ad- dressed. Chapter 6 characterizes the delivery of psychosocial services in the con- text of contemporary breast cancer care, describes a number of service pro- grams, and presents evidence regarding use of psychosocial services by women with breast cancer. Chapter 7 examines barriers to the receipt of psychosocial services, in- cluding issues related to access to care and limitations of systems of care. Chapter 8 surveys ongoing clinical and health services research aimed at improving psychosocial care and outlines research priorities to improve services to women with breast cancer. REFERENCES American Cancer Society. 2002. Cancer Facts & Figures 2002. Atlanta: American Cancer Society. Institute of Medicine and National Research Council. 1999. Ensuring Quality Cancer Care. Washington, DC: National Academy Press. Institute of Medicine and National Research Council. 2003. Childhood Cancer Survivorship: Improving Care and Quality of Life. Washington, DC: The National Academies Press. National Comprehensive Cancer Network. 1999. NCCN practice guidelines for the manage- ment of psychosocial distress. National Comprehensive Cancer Network. Oncology (Huntingt) 13(5A):113â147. Shapiro SL, Lopez AM, Schwartz GE, Bootzin R, Figueredo AJ, Braden CJ, Kurker SF. 2001. Quality of life and breast cancer: Relationship to psychosocial variables. J Clin Psychol 57(4):501â519.