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Meeting Psychosocial Needs of Women with Breast Cancer 8 Research The National Cancer Policy Board, in an effort to understand how resources for research are applied to questions regarding psychosocial services for women with breast cancer, undertook a review of the status of research. Such a review provides only a snapshot as of 2003, but it does give an indication of the prominence and priority of psychosocial subjects as components within the field of breast cancer research, and a sense of the emphasis on different concerns and services within psychosocial breast cancer research. With these understandings, the Board was able to suggest ways in which a research program could be structured in the future to support better responses to psychosocial needs of women with breast cancer. This chapter first describes publication trends in breast cancer-related research and then summarizes major sources of support for research within the following organizations: Federally Sponsored Research Department of Health and Human Services National Institutes of Health (National Cancer Institute, National Institute of Nursing Research) Department of Defense Privately Sponsored Research American Cancer Society Foundations (e.g., Komen Foundation, Avon Foundation)
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Meeting Psychosocial Needs of Women with Breast Cancer Although these organizations are not the only sponsors of breast cancer-related psychosocial research, they represent the major funding sources for such research. Excluded from this review is research supported by health plans, insurers, pharmaceutical companies, and other private organizations. Much of the research in these settings is proprietary. The chapter concludes with the Board’s identification of priority areas for research and recommendations to increase research opportunities. STATUS OF BREAST CANCER-RELATED RESEARCH Publications Evaluating trends in research publications is one way to assess the level of activity within a discipline. A resource for tracking such studies in the National Library of Medicine (NLM) Medline bibliographic database, which stores information about individual citations including index terms used to characterize each article (articles are indexed according to a dictionary of medical subject headings called MESH terms). The volume of breast cancer-related psychology research articles appears to have almost tripled from 1990 to 2000 (from 150 to 431 citations), but throughout the period such articles represent a small fraction of breast cancer-related research, less than 7 percent according to Medline searches (Figures 8-1 and 8-2). These trends reflect publications in English, but not limited to articles written by United States investigators. Figures 8-1 and 8-2 therefore reflect trends in the general medical literature, not necessarily trends in the United States. These trends must be interpreted with caution because they may reflect changes in the way MESH headings are applied to index the literature rather than real increases in breast cancer-related psychological research. Research Support A more direct way to assess the status of United States-based breast cancer-related psychosocial research is to describe topics of investigation and levels of research spending. There is no one comprehensive source of information on research support; as part of its review, the Board relied on the following sources: Listings of research projects provided by some organizations (e.g., National Cancer Institute); The federal listing of research projects (CRISP); Review of agency web sites (e.g., Department of Defense); and
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Meeting Psychosocial Needs of Women with Breast Cancer FIGURE 8-1 PubMed citations for breast cancer psychological research, 1990–2000. Citations were identified in the National Library of Medicines’s PubMed database using the MESH term “breast neoplasms,” and the MESH subheading “psychology.” Only articles published in English are counted. Informal contacts with agency representatives known to be involved in research (e.g., foundations). Despite the best efforts of the Board, the description of the nation’s breast cancer-related psychosocial research portfolio that follows may under- or overestimate the actual level of research. Some research activities may have been missed because of limitations of research tracking systems. The review is limited to currently active research projects for most organizations. Federally Sponsored Research National Cancer Institute, Office of Cancer Survivorship The main locus of cancer-related psychosocial research support within the Department of Health and Human Services (DHHS) is the National Cancer Institute (NCI). Table 8-1 describes the NCI’s overall budget request for 2004, which includes $46 million for cancer survivorship research as detailed in Table 8-2 (0.7 percent of the total FY 2004 budget request). Cancer survi-
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Meeting Psychosocial Needs of Women with Breast Cancer FIGURE 8-2 PubMed citations for psychology related breast cancer research as a percentage of all breast cancer-related research, 1990–2000. Percentages were calculated as the number of psychology-related breast cancer citations (as described in Figure 8-1) divided by the number of citations categorized under the MESH term “breast neoplasms.” Only articles published in English are counted. vorship research has been designated by NCI as an “Extraordinary Opportunity for Investment.” A research initiative focused on long-term survivors was announced in 2003, providing $20 million to support awards for studies of individuals who are five years or more beyond cancer diagnosis (http://grants1.nih.gov/grants/guide/rfa-files/RFA-CA-04-003.html, accessed April 14, 2003). NCI’s work on survivorship is administered through its Office of Cancer Survivorship (OCS), which was established in 1996 to promote research and to provide information to cancer patients, their families, health-care providers, advocates, and the research community (http://dccps.nci.nih.gov/ocs/, accessed April 18, 2003). OCS grants relating to breast cancer are shown in Table 8-3. About half of these are on psychosocial or quality of life subjects. National Cancer Institute, Office of Behavioral Research Psychosocial research is also supported through the NCI’s Office of Behavioral Research (BRP). Research supported in this office ranges from basic behavioral research to research on the development, testing and dis-
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Meeting Psychosocial Needs of Women with Breast Cancer TABLE 8-1 NCI’s Budget Request for Fiscal Year 2004 (in thousands) Fiscal Year 2003 President’s Budget $ 4,637,869 Increase to core budget 294,014 Capacity building increase Enhancing investigator-initiated research 69,887 Expanding the capacity of centers, networks, and consortia 79,530 National clinical trials program in treatment and prevention 340,100 Developing bioinformatics for cancer research 88,000 Subtotal capacity building 577,517 Discovery and application increase Genes and the environment 51,800 Signatures of the cancer cell and its microenvironment 41,200 Molecular targets of prevention and treatment 54,800 Cancer imaging and molecular sensing 78,700 Cancer communications 39,750 Subtotal discovery and application 266,250 Public health emphasis increase Improving the quality of cancer care 27,000 Reducing cancer-related health disparities 61,350 Cancer survivorship 46,000 Research on tobacco and tobacco-related cancers 76,000 Subtotal public-health emphasis 210,350 Total FY 2004 budget request 5,986,000 SOURCE: The Nation’s Investment in Cancer Research: A Plan and Budget Proposal for Fiscal Year 2004, Prepared by the Director of the National Cancer Institute. semination of disease prevention and health promotion interventions in areas such as tobacco use, screening, dietary behavior and sun protection. The BRP programs support five areas (http://www.dccps.nci.nih.gov/brp/index.html): Applied Cancer Screening Research. Facilitates and supports effectiveness trials and related social and behavioral research to promote the use of effective cancer screening tests, as well as strategies for informed decision making regarding all cancer screening technologies, in both community and clinical practice. Basic Biobehavioral Research. To serve as a national model for promoting, sponsoring, and supporting basic biobehavioral research and training. Health Communication and Informatics Research. To advance communication and information science across the cancer continuum—prevention, detection, treatment, control, survivorship, and end of life. Communication and information science systematically examines the fundamental processes and effects of human and mediated communication. Health Promotion Research. Coordinates research on non-tobacco behavioral prevention of cancer in the areas of diet, physical activity, energy balance, virus exposure, and sun exposure.
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Meeting Psychosocial Needs of Women with Breast Cancer TABLE 8-2 Cancer Survivorship Component of NCI’s Budget Request for Fiscal Year 2004 (in millions) Research—biological, physical, psychological, and social response to disease, treatment and recovery $9.50 Physiologic and psychosocial effects on post-treatment survivors 3.00 Late effects case studies 5.00 Socio-cultural, behavioral, emotional, and spiritual factors 1.50 Intervention research—to reduce cancer-related late morbidity and mortality 12.00 Research of cost-effective medical, educational, and psychosocial interventions 9.00 Development of interventions for families, minorities, and medically underserved 3.00 Development of assessment tools for quality of life and post-treatment care 5.50 New instruments for quality of life assessment (e.g., toxicity criteria for late effects) 2.00 Screening tools for high risk physical, psychosocial, or behavioral outcomes 2.00 Use of applied/theoretical statistics to establish criteria for clinically significant changes 0.50 Collaboration with other NIH institutes to develop measures to evaluate comorbidities 1.00 Enhance NCI’s capacity to track outcomes for cancer survivors 5.50 Expansion of data collection on health-related outcomes for survivors in SEER registries 1.00 Development of infrastructure for clinical trials groups to follow patients long-term 2.00 Establishment of separate registry for pediatric cancer survivors 2.50 Development and dissemination of new interventions and best practice guidelines 3.50 Best practice guidelines for follow-up care and surveillance for survivors 1.25 Support studies to test adoption and impact of best practices in post-treatment care 1.50 Develop/disseminate curricula and standards for delivery of effective psychosocial care 0.75 Expansion of scientific base for understanding the biologic mechanisms in adverse late effects 9.00 Funding of pre-clinical studies examining incidence/mechanism of late effects treatment 3.00 Support research that seeks to investigate the neuropsychologic impact of cancer therapy 6.00 Management and support 1.00 Total 46.00 SOURCE: The Nation’s Investment in Cancer Research: A Plan and Budget Proposal for Fiscal Year 2004, Prepared by the Director of the National Cancer Institute. Tobacco Control Research. To reduce cancer incidence and mortality caused by tobacco use through a comprehensive research program. To provide recommendations to the scientific and public health communities by synthesizing and disseminating research findings. A selection of some of the grants from this office that have focused on psychosocial research is displayed in Table 8-4.
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Meeting Psychosocial Needs of Women with Breast Cancer TABLE 8-3 Selected Current Breast Cancer-Related Survivorship Research, Office of Cancer Survivorship, NCI Facilitating positive adaptation to breast cancer Center for psycho-oncology research Breast cancer survivors, physical activity, and quality of life Bone marrow transplant (BMT) survivors study Young breast cancer survivors—population based cohort Quality of life in adult cancer survivors Menopausal symptom relief for women with breast cancer Breast cancer and function in aging women Quality of life of older long-term cancer survivors Quality of life intervention in breast cancer survivors Insomnia intervention for breast cancer survivors Psychological well being in long-term cancer survivors African American breast cancer survivor quality of life Characteristics of long-term breast cancer survivors Adjustment to breast cancer Home-based moderate exercise for breast cancer patients The economic consequences of cancer survival Breast cancer treatment outcomes in older women Psychosocial treatment effects on cancer survival Return to work in cancer survivors: A pilot study Enhancing long-term survival after BMT Biobehavioral and supportive needs during high dose TMT Enhancing recovery from blood and marrow transplantation Cognitive effects of breast cancer treatment Impact of maternal breast cancer on children Quality of life and relationships after BMT SOURCE: http://dccps.nci.nih.gov/ocs/portfolio.asp, accessed April 18, 2003. Department of Defense Beginning in FY 1992, the U.S. Congress directed the Department of Defense (DoD) to manage several appropriations for an extramural grant program directed toward specific research initiatives. The United States Army Medical Research and Materiel Command (USAMRMC) established the office of the Congressionally Directed Medical Research Programs (CDMRP) to administer these funds. Between FY 1992 and 2003, $1.37 billion has been appropriated by Congress to DoD for research on breast cancer. In addition, $7.0 million was generated in sales of the U.S. Postal Service’s first-class stamp (Public Law 105-41, Stamp Out Breast Cancer Act [H.R. 1585]). The CDMRP strives to identify gaps in funding and provide award opportunities that will enhance program research objectives without duplicating existing funding opportunities.
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Meeting Psychosocial Needs of Women with Breast Cancer TABLE 8-4 Selected Grants from NCI’s Office of Behavioral Research, FY 2001 and 2002a Project Title Fatigue, Sleep and Circadian Rhythms in Breast Cancer Psychological Intervention for Women with Breast Cancer The End-of-Life Family Workshop Pain Assessment via Role-Play Internet Simulation Health Promotion for Women at Risk for Breast Cancer Breast Cancer Risk-Tailored Messages for More Women Self-Advocacy and Empowerment for People with Cancer We Can Cope—Family Support When a Parent Has Cancer Vicarious Dissonance, Attitude Change & Identity Web-Based Support for Informal Caregivers in Cancer Culturally Targeted Health Information Network Spiritually-Based Breast Cancer Communication Cognitive Behavioral Aspects of Cancer Related Fatigue Breast Cancer Patients Relatives—Response Over Time Interactive CD-ROM for Coping with Breast Cancer Quality of Life, Ethnicity, and Breast Cancer Survivors Hormones, Quality of Life & Breast Cancer Support Groups aThe list contains grants carried over from prior fiscal years (FY 2001 and prior) and new grants awarded in FY 2002. SOURCE: NCI website, accessed on 2/27/03: http://dccps.nci.nih.gov/brp/research.asp. The Breast Cancer Research Program (BCRP) has sponsored over 2,800 awards for peer-reviewed breast cancer research at the community, state, and national level (Table 8-4). The BCRP divides the awards into three categories: research (basic and clinical), infrastructure, and training and recruitment. In addition, an Innovator Award was initiated in FY01 that grants $5 million to individuals engaged in “visionary research.” Within the BCRP, psychosocial research awards fall within the category of “Biobehavioral Sciences.” A total of 35 of the 105 biobehavioral awards of the BCRP pertain to psychosocial issues (Table 8-5).
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Meeting Psychosocial Needs of Women with Breast Cancer TABLE 8-5 BCRP Study Awards with Psychosocial Component Name of Research Study Institution $ Amount Fiscal Year Evaluation of a Peer-Staffed Hotline for Families Who Received Genetic Testing for Risk of Breast Cancer Univ. of Pennsylvania $79,250.00 2000 Assisting Survivors in Meeting Challenges at End of Treatment: A Problem Solving Approach Univ. of Pennsylvania $79,250.00 2000 Hatha Yoga and Breast Cancer: Integrating a Mind/Body Intervention During Adjuvant Chemotherapy Columbia Univ. $81,725.00 2000 A Longitudinal Study of Emotional Distress and the Use of Complementary Alternative Medicine in Women with Breast Cancer Univ. of Hawaii $66,000.00 2000 Breast Cancer Protective Behaviors Among Low-income, Ethnically Diverse Women: The Role of Biopsychosocial Factors Florida State Univ. $22,000.00 2000 Spirituality-Based Intervention for African American Women with Breast Cancer Wayne State Univ. $334,599.00 1999 Interdisciplinary Research Training in Breast Cancer Yale Univ. $749,432.00 1999 Medical Decision-Making About Breast Cancer Among African Americans: Evaluating the Roles of Beliefs, Knowledge, Medical Care Access, and Social Support Univ. of Texas at Houston $73,513.00 1999 Internet Support and Information for Women with Breast Cancer Univ. of Alabama at Birmingham $61,519.00 1999 Stress and Immunity Breast Cancer Project Ohio State Univ. $808,568.00 1998 Identifying Quality of Life and Psychosocial Risk Factors and Their Sociocultural Mediators in African American, Filipino, Latino, and White Breast Cancer Survivors UCLA $761,421.00 1998 Postdoctoral Training Program in Biobehavioral Breast Cancer Research Mount-Sinai (NY) $782,413.00 1998 Psychological Distress, Cognitive Bias, and Breast Cancer Surveillance Behavior in Women Tested for BRCA1/2 Mutation Mount Sinai (NY) $125,737.00 1998 The Effect of Emotional Disclosure Interventions on Psychological and Physical Well-Being of Breast Cancer Patients Virginia Commonwealth University $44,622.00 1998
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Meeting Psychosocial Needs of Women with Breast Cancer Name of Research Study Institution $ Amount Fiscal Year The Development and Evaluation of an Innovative Internet-Based Breast Cancer Psychosocial Intervention Stanford Univ. $327,015.00 1998 Inherited Susceptibility to Breast Cancer in Healthy Women: Mutations in Breast Cancer Genes, Immune Surveillance and Psychological Distress Sloan-Kettering $481,210.00 1997 Psycho-Endocrine-Immune Profile: Implications for Quality of Life in Breast Cancer Patients Loyola University– Chicago $325,626.00 1997 Development of an Integrated Program of Health related Quality of Life Research for the National Surgical Adjuvant Breast and Bowel Project (NSABP). Univ. of Pittsburgh $227,876.00 1996 Social Support and Endocrine Function: A Randomized Trial with Breast Cancer Patients Ohio State Univ. $82,932.00 1996 Preventive Psychosocial Intervention for Young Women with Breast Cancer Univ. of Pittsburgh $292,243.00 1996 Stress and Coping in Genetic Testing for Cancer Risk Univ. of Michigan $837,296.00 1995 Effects of Psychosocial Intervention in Women Following Breast Cancer Diagnosis Univ. of Rochester $149,991.00 1995 Delays and Refusals in Treatment for Breast Cancer among Native American and Hispanic Women with Breast Cancer Univ. of New Mexico $72,043.00 1995 Psychobehavioral Impact of Genetic Counseling and Breast Cancer Gene Testing in Healthy Women of African Descent Sloan-Kettering $579,581.00 1995 Psychological Intervention for Women with Breast Cancer Ohio State Univ. $86,896.00 1993 & 94 Enhancing Positive Reactions to Breast Cancer Risk Appraisal Hutchinson Cancer Center $597,673.00 1993 & 94 The Effects of a Comprehensive Coping Strategy on Clinical Outcomes in Breast Cancer Bone Marrow Transplant Patients and Primary Caregiver Johns Hopkins Univ. $783,572.00 1993 & 94
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Meeting Psychosocial Needs of Women with Breast Cancer Name of Research Study Institution $ Amount Fiscal Year Effects of Meditation-Based Stress Reduction in Younger Women with Breast Cancer Univ. of Massachusetts $799,843.00 1993 & 94 Psycho Educational Group Intervention for Women at Increased Risk for Breast Cancer Strang Cancer Center $799,837.00 1993 & 94 The Effects of Brief Psychotherapy on Coping with Breast Cancer North Dakota State Univ. $143,510.00 1993 & 94 Incidence and Psychophysiology of PostTraumatic Stress Disorder in Breast Cancer Victims and Witnesses Harvard Univ. $724,375.00 1993 & 94 Knowledge and Beliefs of Breast Cancer Among Elderly Puerto Rican Women Rico Univ. of Puerto $771,159.00 1993 & 94 An Evaluation of A Peer Support Program to Improve Quality of Life with Breast Cancer Kaiser Foundation $595,732.00 1993 & 94 Emotional Processing and Expression in Breast Cancer Patients: Effects on Health and Psychological Adjustment Univ. of Kansas $145,839.00 1993 & 94 A Community Study of Psychological Distress and Immune Function in Women with Family Histories of Breast Cancer Sloan-Kettering $200,000.00 1993 & 94 SOURCE: Department of Defense Breast Cancer Research Program: Search Awards Database, http:Hcdmrp.army.mil/cgi-bin/search/search-bcrp.pi, accessed November 21, 2002. Privately Funded Research Private philanthropic organizations have been major sponsors of breast cancer research. This section of the report reviews the research activity of the American Cancer Society, the Avon Foundation, the Susan G. Koman Foundation, and the Bristol Myers Squibb Foundation. American Cancer Society The American Cancer Society is the largest non-governmental source of cancer research funding in the United States and supports psychosocial and behavioral research. In FY 2001-2002, approximately 20 percent of the total research program was devoted to these areas (see Table 8-6). The Society’s intramural research program includes a Behavioral Research Center, which is conducting two large population-based surveys of
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Meeting Psychosocial Needs of Women with Breast Cancer TABLE 8-9 The Susan G. Komen Breast Cancer Foundation 2001 Population Specific Grants Grant Institution Amount (in US$) Health Care Experiences of Lesbians with Breast Cancer Boston University $120,638 Variation in Stage at Diagnosis in Breast Cancer Public Health Institute $128,867 Across California: Effects of Race/Ethnicity and Rural/Urban Residence Influence of Behavioral Factors on Breast Cancer Risk and Survival Howard University $215,168 African American Lesbian Breast Cancer Screening Study Mautner Project for Lesbians with Cancer $237,847 Korean American Breast Health Project in Maryland The Johns Hopkins University $249,442 Breast Cancer Control: Needs and Practices of African American Women and Their Providers University of Southern Mississippi $248,483 Genetic Epidemiology of Breast Cancer in African Americans Wayne State University $249,493 Impact of Culture on Breast Cancer Screening in Chinese American Women Georgetown University $249,998 Project Hoffnung: Delivering Hope with Culturally Appropriate Breast Health to Amish and Mennonite Communities University of Utah College of Nursing $249,969 “Comadre A Comadre” A One-on-One Peer Support Project for Hispanic Women with Breast Cancer University of New Mexico $250,000 Not Yet Well: the Self Management of Post-Treatment Symptoms by Breast Cancer Survivors University of California, Los Angeles $248,183
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Meeting Psychosocial Needs of Women with Breast Cancer Grant Institution Amount (in US$) The Helping Path, Four Directions: A California Indian Breast Cancer Education University of California, Los Angeles $247,065 Lay Health Advisors to Promote Breast Cancer Screening Among Asian Americans University of Michigan $250,000 Total $2,945,153 SOURCE: Accessed from website: http:Hwww.komen.org/grants/awards/O I awards. asp?id=1, accessed February 20, 2003. to patients and their families at a local level. A second goal is to test the feasibility of training master’s level counseling psychologists in psychosocial oncology in order to increase the cadres of professionals available to patients in smaller communities. To date, 150 psychologists in Florida have been given face to face and online training in psychosocial counseling in oncology. A current plan is to explore the development of this group further in an effort between the American Psychosocial Oncology Society (APOS) and the Bristol Meyers Squibb Foundation in which APOS will provide a core online curriculum and an examination to those who wish to add qualifications in psychosocial oncology. Counselors in Employment Assistance Programs and family service organizations, already trained in counseling should be rather easily trained in psychosocial issues in oncology. If so, the demonstration will have been able to increase the number of psychosocial oncology counselors with a wider geographic distribution who can be reached through the APOS Referral Directory and toll-free number, along with the traditional psychosocial oncology professionals (www.apos-society.org; 1-866-APOS-4-HELP). SUGGESTIONS FOR FUTURE RESEARCH PRIORITIES Relative to other areas of research in breast cancer, psycho-oncology is still in its infancy. Just over 20 years have elapsed since the first randomized psycho-oncology trial in breast cancer was reported by Maguire in 1980 (Maguire et al., 1983), and for this report Goodwin was able to find and review a total of 31 randomized trials in women with breast cancer in the literature (see Chapter 5). These trials cover a broad spectrum of interven-
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Meeting Psychosocial Needs of Women with Breast Cancer tions (relaxation/hypnosis with or without imagery, group interventions involving structured or unstructured groups, supportive–expressive therapy, cognitive–behavioral therapy, mind–body–spirit interventions, psycho-educational interventions and/or peer discussion, as well as individual interventions involving telephone counseling, specialized nursing interventions, cognitive–behavioral therapy and problem-solving skills training). The reported trials have enrolled from 24 to 312 women, and the interventions evaluated have ranged from 75 minutes to lifelong. Some general conclusions can be drawn regarding the effectiveness of these psychosocial interventions in breast cancer. For example, there is fairly consistent evidence that relaxation/hypnosis/imagery interventions are beneficial in a variety of acute care settings, particularly in the short-term. Furthermore, there is growing evidence of the efficacy of a variety of group and individual interventions, using different strategies for different periods of time at different points along the breast cancer trajectory. Despite this, many unresolved questions remain which should be the focus of future research activities. Based on discussions at its workshop, the analysis of Goodwin in her commissioned paper, and its own deliberations reviewing the trials presented and analyzed in Chapter 5, the Board was able to formulate some suggestions for areas of needed research and priorities. Along with some brief comments on the relevance of psychosocial research in other than breast cancer and on indexing, coordination, and collaboration issues, these suggestions are discussed below. The Board believes that much of value can be learned building on the base of the existing trials. Determining Relative Benefits of Different Interventions Most of the reported randomized trials have compared an active intervention to a no-treatment control group, an attention control group, or a control group that passively received educational materials. Few have compared different active interventions. As a result, there is little information available regarding whether one intervention is better than others and, if so, whether such interventions are more effective in all settings, and with all types of patients, or whether specific interventions are more effective with specific groups of patients. With some types of interventions, such as relaxation/imagery, the approach to the intervention does not appear to be as important as the fact that the intervention was delivered. In other types of interventions, for example, individual interventions, the specific approach appears to be critical in determining benefits of the intervention. Furthermore, although there is early evidence that group interventions (of a variety of types) are beneficial in both early stage and advanced breast cancer, it is unclear whether one type of group intervention is better than others, what the optimal duration of such intervention should be, whether the type or
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Meeting Psychosocial Needs of Women with Breast Cancer duration of the intervention should be tailored to individual patient characteristics or phase of illness, and, if that is the case, what those characteristics are. Existing research suggests that the psychological profile of the patient may be one such characteristic (Goodwin et al., 2001; Hosaka et al., 2001b, 2000a, 2000b, 2000c). Additional research to directly compare different interventions that have been shown to be effective in breast cancer (e.g., expressive–supportive group therapy versus cognitive–behavioral group therapy) is important in order to determine the relative effectiveness of these interventions overall and in subgroups of interest (e.g., distressed versus non-distressed). Ideally, this research should be conducted in early stage and advanced breast cancer separately as it is possible that effects may differ. Similarly, group interventions should be compared to individual interventions and efforts made to identify the benefits of different components of the more complex interventions (e.g., the contribution of relaxation and imagery to a cognitive–behavioral intervention). In this comparative research, outcome measures should be selected that target attributes likely to be influenced by the intervention (e.g., psychological status—mood, traumatic stress symptoms, coping—as well as overall quality of life, patient satisfaction, and cost-effectiveness). Given the current evidence of a variety of benefits of psychosocial interventions in breast cancer, the use of no-treatment control arms may become increasing difficult for ethical reasons; this will enhance the likelihood of comparative research in future. Determining Optimal Timing and Duration of Psychosocial Interventions In general, randomized trials of relaxation/hypnosis have tended to involve short interventions (one session to 6 months), whereas interventions in early stage breast cancer have been somewhat longer (4 weeks to 3 or 4 months), and interventions in women with metastases have been the longest (6 months to the end of life). However, none of the randomized trials to date has evaluated the effect of duration of the intervention on the magnitude and persistence of psychosocial benefits or on cost-effectiveness. Randomized trials to evaluate the optimal duration of intervention will be important, and these trials should be conducted separately in early stage and late stage breast cancer, as it appears likely the optimal duration of the intervention differs according to the disease stage. Within each phase of illness, research is also needed to identify the optimal timing of psychosocial interventions. Identifying Patient Characteristics Associated with Intervention Benefits A number of the published trials have suggested that psychological benefits vary according to patient characteristics. For example, Goodwin et al.
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Meeting Psychosocial Needs of Women with Breast Cancer found that psychological benefits of supportive–expressive therapy in metastatic breast cancer were limited to women who were distressed at the time the intervention began (Goodwin et al., 2001). Similar differential effects in subgroups of women have been reported by others, although there is little evidence that predictors of benefit are consistent across studies (Hosaka et al., 2000c, 2001a, 2001b, 2000b). Many of the predictors will likely be psychosocial in nature (e.g., presence of acute distress, underlying psychosocial illness or adjustment disorder, personality traits, social and family support). However, some may involve demographic characteristics (e.g., age, social status) or medical factors. For example, relaxation/imagery has been shown to be effective in early-stage breast cancer, but the single trial in women with metastases yielded no benefit (Arathuzik, 1994). Although these results should not be interpreted as proof of benefit only in early disease, they point to the need for more formal evaluation in the metastatic setting. Because it is possible that some women may benefit more from certain interventions and, indeed, that certain interventions may benefit certain types of women to a greater extent than others, research is desirable to further examine the patient characteristics that are predictive of greatest benefit of psychosocial interventions in breast cancer. Some of this research might involve re-analysis of existing trials, but it is likely that new trials will also be necessary. One of the goals of this research should be to determine whether some women do not require psychosocial intervention, in the same way that some women do not require adjuvant chemotherapy. Understanding the Role of Nursing Interventions A considerable number of randomized trials, predominantly in early stage breast cancer, have evaluated nursing interventions. There is some evidence of benefit for these nursing interventions. However, these studies all evaluated different interventions, some used small sample sizes, and some of the studies had significant methodologic limitations. Because nurses are so intimately involved in the care of breast cancer patients, better understanding is needed of the precise benefits of specialized nursing interventions on the psychosocial status of women with breast cancer and how these interventions are best integrated into a more comprehensive psychosocial intervention program. Evaluating Peer Support/Peer Discussion Groups Peer support groups have gained widespread acceptance among women with breast cancer. However, there is little clear evidence of benefit, and the single randomized trial that evaluated facilitated peer discussion failed to identify any psychological benefits (Helgeson et al., 2000, 1999). Although
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Meeting Psychosocial Needs of Women with Breast Cancer many testimonials exist as to the benefits of individual peer support (Cella and Yellen, 1993), formal evaluation of the benefit of this support is lacking. Given the nature and widespread availability of peer support, the use of randomized designs may be challenging; however, evaluation using the strongest methodology possible is needed. Evaluating Novel Interventions There is growing interest among breast cancer patients and their families in the potential benefits of non-traditional, complementary and alternative medicine approaches to psychosocial support. These approaches include Internet chat groups and peer support groups, as well as a variety of non-traditional therapies, many of which focus on helping patients distract themselves from their breast cancer experience or turn their focus to other areas of their lives. Such interventions include yoga, reflexology, reiki, t’ai chi, music therapy, and art therapy. Because these interventions are of great interest to patients, and because they are often pursued by patients with little evidence of benefit apart from anecdotal testimonials, formal evaluation of their benefit in the setting of randomized trials would be useful. Such trials could include wait list control groups if resistance to randomization is encountered. The importance of research in this area is highlighted by the observations of Targ and Levine that a complex mind–body–spirit group intervention was at least equivalent to a standard psychoeducational support group intervention and that it led to enhanced satisfaction, fewer dropouts, and greater spiritual integration. Addressing the Needs of Breast Cancer Survivors Only one randomized trial of a purely psychosocial intervention was conducted in breast cancer survivors, and it did not address the psychosocial needs of breast cancer survivors (Fogarty et al., 1999). Instead, it used them as a convenience sample to evaluate the benefits of an enhanced compassion videotape. Research into survivorship issues is just beginning, but it is an important area involving millions of people. This research should be facilitated, and, as problems are identified, targeted interventions should be developed and tested to address the unique needs of this large population. Addressing Family Issues Only a small number of the randomized trials reported to date have involved partners or family members of breast cancer patients. Yet it is widely recognized that these individuals are often greatly affected by the illness of the breast cancer patient and that they may suffer significant emo-
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Meeting Psychosocial Needs of Women with Breast Cancer tional distress that may continue long after the breast cancer patient dies. The Board believes that research should be pursued to identify the psychosocial needs of this population and to develop interventions to ameliorate their psychological distress. Addressing Cultural/Minority Issues None of the randomized trials in the United States addressed cultural and/or minority issues. Although there is some evidence from some countries outside of the United States that psychosocial interventions may have similar effects in different cultures, the influence of cultural and/or minority background requires further investigation (Fukui et al., 2000; Hosaka et al., 2000a, 2000b, 2000c, 2001a, 2001b). Specifically, descriptive research should be carried out to examine the unique needs of different cultures and/ or minority groups, followed by development of interventions that target these unique needs. Developing Appropriate Measures of Psychosocial Outcomes Many of the randomized trials reported to date have used a fairly consistent group of well studied psychosocial questionnaires, including the Profile of Mood States, the Impact of Events Scale, the Beck Depression Inventory, and the State Trait Anxiety Index. However, many others have used novel instruments, some of which are not well validated or are not well known. Furthermore, the standard psychosocial measurement instruments do not address all of the outcomes that are of interest in psychosocial intervention trials in breast cancer. A critical review is needed to identify domains and attributes that are not well addressed by well characterized questionnaires commonly used in breast cancer psychosocial intervention studies (e.g., cognitive functioning), to identify instruments used in other settings that measure those attributes, and to identify areas where there should be development of new instruments. The importance of different psychosocial outcomes should be prioritized (to the extent possible), and the magnitude of psychosocial benefit that is clinically important should be explored. This research might involve a consensus conference to identify a small number of clearly defined outcomes that could be used across a broad spectrum of trials so that the results of trials are more readily compared, followed by targeted research studies. Translation of Research Findings to Community Practice There is considerable evidence of efficacy of some types of psychosocial interventions in breast cancer; however, the extent to which these interven-
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Meeting Psychosocial Needs of Women with Breast Cancer tions are used in clinical practice is unclear. Therefore, the current use of psychosocial interventions in breast cancer in academic and private medical practice should be evaluated. This evaluation should address access to, and utilization of, relaxation/hypnosis, peer support, and novel forms of support discussed above as well as more traditional group and individual interventions. An assessment of barriers to more widespread use of psychosocial interventions in breast cancer may be useful. Such barriers include (but are not limited to) cost, patient acceptability, physician acceptability, availability and preferences of psychosocial practitioners, logistical barriers to delivery, and knowledge of (or belief in) the effectiveness of psychosocial interventions. Evaluations are needed of psychosocial interventions implemented in “real world” settings, in which cost and integration into breast care in various community settings are assessed (Redman et al., 2003). Applicability of Findings from Other Research to Women with Breast Cancer In addition to the psychosocial research conducted in breast cancer patients reviewed here, there is also a large body of literature describing psychosocial research in other cancer types and in patients with other serious illnesses. The extent to which the results of this research in other settings are generalizable to women with breast cancer is not clear. A critical review of the published literature in other illnesses, focusing predominantly on other cancers, could provide evidence of generalizability, or lack of generalizability, of psychosocial research findings in these other settings to breast cancer. Tracking Results of Psycho-Oncology Studies Indexing of psycho-oncology studies is inconsistent and may be delayed depending on the journal used. Because these trials may be published in journals related to different disciplines, they are often difficult to find, even in exhaustive literature searches. Encouragement of a more standardized and timely approach to indexing would be helpful. A prospective registry of psychosocial intervention trials would facilitate tracking of ongoing studies and assist in planning of new intervention trials. FINDINGS AND RECOMMENDATIONS These research priorities will be addressed most effectively if the psycho-oncology research community works together to build on the strengths of previous research and to ensure that future research provides clinically meaningful information. Unless there is a compelling reason to study en-
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Meeting Psychosocial Needs of Women with Breast Cancer tirely new intervention approaches, the comparative research outlined above should compare two or more therapies that have previously been shown to be effective; the most effective therapy can then be used in subsequent comparative work. Similarly, if one or more patient characteristics are identified as being predictive of benefit in one intervention study, future studies should examine those characteristics (as well as others if desired) in an attempt to replicate the earlier finding and contribute to a body of knowledge regarding predictors of benefit. This approach may be facilitated by more widespread conduct of multicenter trials of psychosocial interventions, a move away from many of the single-center studies that have been reported to date. In order to facilitate this broader type of research, it may be necessary to establish psychosocial intervention research networks, similar to those that exist for evaluation of other breast cancer treatments (chemotherapy, radiation, surgery). These collaborative networks might be “free standing,” but the benefits of integrating these networks into already established clinical trials groups should also be explored. To continue progress in the research base that is necessary for sound development of interventions to address psychosocial, psychiatric, and quality of life issues in breast cancer, the Board recommends: 1. 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 are needed of the cost and effectiveness of delivery models that show promise in improving access to psychosocial support services. 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;
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Meeting Psychosocial Needs of Women with Breast Cancer 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 on other than selected patients mostly in tertiary settings, or had not been unblinded, with small sample size, of insufficient power, of short duration, and the like. Future study designs should try to minimize such weaknesses. 2. 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 multicenter 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. 3. 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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