Meeting Psychosocial Needs of Women with Breast Cancer (2004) / Chapter Skim
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8 Research
8 Research
Pages 199-228
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From page 199... ...
With these unclerstanclings, the BoarcI was able to suggest ways in which a research program couicI be structured in the future to support better responses to psychosocial neecis of women with breast cancer. This chapter first describes publication trencis in breast cancer-relatecI research ancI then summarizes major sources of support for research within the following organizations: Federally Sponsored Research Department of Health ancI Human Services National Institutes of Health (National Cancer Institute, National Institute of Nursing Research)
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From page 200... ...
Research Support A more clirect way to assess the status of United States-basecI breast cancer-relatecI psychosocial research is to describe topics of investigation ancI levels of research spending. There is no one comprehensive source of information on research support; as part of its review, the BoarcI reliecI on the following sources: · Listings of research projects proviclecI by some organizations (e.g., National Cancer Institute)
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From page 201... ...
. Table 8-1 describes the NCI's overall buciget request for 2004, which inclucles $46 million for cancer survivorship research as cletailecI in Table 8-2 (0.7 percent of the total FY 2004 buciget request)
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From page 202... ...
vorship research has been clesignatecT 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 awarcTs for stucTies of incTivicluals who are five years or more beyond cancer diagnosis (http:// grantsl.nih.gov/grants/guicle/rfa-files/RFA-CA-04-003.htmI, accessed April 14, 20031. NCI's work on survivorship is aciministerecT through its Office of Cancer Survivorship (OCS)
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From page 203... ...
related social anc! 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 anc!
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From page 204... ...
. registries Development of infrastructure for clinical trials groups to follow patients long-term Establishment of separate registry for pediatric cancer survivors Development and dissemination of new interventions and best practice guidelines pest practice guidelines for follow-up care and surveillance for survivors Support studies to test adoption and impact of best practices in post-treatment care Develop/disseminate curricula and standards for delivery of effective psychosocial care Expansion of scientific base for understanding the biologic mechanisms in adverse late effects Funding of pre-clinical studies examining incidence/mechanism of late effects treatment Support research that seeks to investigate the neuropsychologic impact of cancer therapy Management and support Total $9.50 3.00 5.00 1.50 12.00 9.00 3.00 5.50 2.00 2.00 0.50 1.00 5.50 1.00 2.00 2.50 3.50 1.25 1.50 0.75 9.00 3.00 6.00 1.00 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.
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From page 205... ...
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 13 MT · 13iobehavioral 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 13 MT SOURCE: http://dccps.nci.nih.gov/ocs/portfolio.asp, accessed April 18, 2003. Department of Defense Beginning in FY 1992, the U.S.
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From page 206... ...
breast cancer research at the community, state, anc! national level (Table 8-41.
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From page 207... ...
of with 13reast Cancer Alabama at Birmingham Stress and Immunity 13reast Cancer Project Identifying Quality of Life and Psychosocial Risk Factors and Their Sociocultural Mediators in African American, Filipino, Latino, and White 13reast Cancer Survivors Postdoctoral Training Program in 13iobehavioral 13reast Cancer Research Psychological Distress, Cognitive Bias, and 13reast Cancer Surveillance Behavior in Women Tested for 13RCA1/2 Mutation The Effect of Emotional Disclosure Interventions on Psychological and Physical Well-13eing of 13reast Cancer Patients Univ. of $79,250.00 2000 Pennsylvania Univ.
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From page 208... ...
. Social Support and Endocrine Function: A Randomized Trial with 13reast Cancer Patients Preventive Psychosocial Intervention for Young Women with 13reast Cancer Stress and Coping in Genetic Testing for Cancer Risk Effects of Psychosocial Intervention in Women Following 13reast Cancer Diagnosis Delays and Refusals in Treatment for 13reast Cancer among Native American and Hispanic Women with 13reast Cancer Psychobehavioral Impact of Genetic Counseling and 13reast Cancer Gene Testing in Healthy Women of African Descent Psychological Intervention for Women with 13reast Cancer Enhancing Positive Reactions to 13reast Cancer Risk Appraisal The Effects of a Comprehensive Coping Strategy on Clinical Outcomes in 13reast Cancer 13 one Marrow Transplant Patients and Primary Caregiver Stanford Univ.
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From page 209... ...
American Cancer Society The American Cancer Society is the largest non-governmental source of cancer research funding in the United States anti supports psychosocial anti behavioral research. In FY 2001-2002, approximately 20 percent of the total research program was clevotecI to these areas (see Table 8-61.
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SOURCE: American Cancer Society, http://www.cancer.org/docroot/RES/content/ RES_7_3_Funding_13y_Research_Area.asp, accessed May 1, 2003. cancer survivors.
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From page 211... ...
The results will provide a basis for advocacy anti planning by the American Cancer Society as well as by other health organizations anti agencies. Other research that the ACS Behavioral Research Center is conducting inclucles a stucly of the use of complementary therapies by breast anti prostate cancer survivors, as well as a corresponding survey of physicians who treat cancer patients.
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From page 212... ...
Funding goes clirectly to United States scientists who compete for the awards. Avon Foundation clollars support clirect costs of early phase breast cancer clinical trials anti other studies in prevention, diagnosis, anti treatment, inclucling studies focusing on the neecis of minority anti other meclically unclerservecI patients.
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From page 213... ...
Women assisted by the "AVONCares" program are able to receive Cancer Care's other services, including professional counseling, education and information, breast prostheses and wigs. National Breast Cancer Coalition · Support to develop leadership skills among cancer advocates and to develop A Guidebook to Quality Breast Cancer Care: a consumer guide that helps women define quality breast care and secure access to evidence-based and patient-centered treatment and care.
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From page 214... ...
· Funds support maximizing relationship between the Women's Center and Fairfax Hospital Cancer Center, focusing on Asian and Hispanic women who are medically underserved. Women are taught to understand early detection, risk reduction, how to obtain access to clinical screening, diagnostic and treatment services, including clinical trials.
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From page 215... ...
· Funding supports the Avon Foundation Breast Cancer Program, focusing on facilitating easier access to care and clinical trials for the medically underserved, and identifying and monitoring women in populations at greater risk for breast cancer. .5 SOURCE: Accessed from Avon website at www.avoncompany.com/women/avoncrusade/ services/beneficiaries_factsheet.shtml)
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From page 216... ...
Greater New York City 13reast Cancer Cancer Patient Matching and Cancer Hope Network North New Jersey Support Psychosocial Support for Latino The Wellness Community Los Angeles County Women with 13reast Cancer Art and Educational Therapy Pilot Presbyterian Healthcare Central New Mexico Program Services Complementary Alternative Charlotte Maxwell San Francisco Bay Area Medicine, Education & Advocacy for 13reast Cancer Complementary Clinic LatinaSHARE: Medical/Community SHARE: Self-Help for Greater New York'City Outreach and Mentoring Project Women with 13reast or Ovarian Cancer, Inc. Psychosocial Support Services for The Wellness Community San Diego 13reast Cancer Patients Counseling for 13reast Cancer UNC Lineberger NC Research Triangle Patients Comprehensive Cancer Area Center 13reast Cancer Education and Cancer Care, Inc.
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From page 217... ...
Rose Dominican Las Vegas Program Hospital and St. Rose Dominican Health 13reast Health Resource Guide Orange County 13reast Orange County Cancer Coalition Counseling for 13reast Cancer UNC Lineberger NC Triangle Area Patients Comprehensive Cancer Center Support for Life: Women Focused on Recovery Complementary Alternative Medicine, Psychosocial Support, Advocacy, and Education for Low Income Women with 13reast Cancer The Wellness Community Phoenix The Charlotte Maxwell Complementary Clinic San Francisco Bay Area WINGS WINGS San Antonio 13reast Cancer Registry, Barbara Ann Karmanos Detroit Race for the Psychosocial Screening, and Cancer Institute Cured Improvement of Compliance and Reduction of Distress 13reast Health Education for Nurses Intermountain Health Care Salt Lake City 13reast Cancer Support and Education Cancer Care Connecticut Project for Underserved Women Education and Psychosocial Support for Women with 13reast Cancer Cancer Wellness Chicago Organizations of Metropolitan Chicago Area SOURCE: http://www.komen.org/grants/step/stepresults.asp, accessed February 20, 2003.
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From page 218... ...
Health Care Experiences of Boston University $120,638 Lesbians with 13reast Cancer Variation in Stage at Public Health Institute $128,867 Diagnosis in 13reast Cancer Across California: Effects of Race/Ethnicity and Rural/Urban Residence Influence of Behavioral Howard University $215,168 Factors on 13reast Cancer Risk and Survival African American Lesbian 13reast Cancer Screening Study Korean American 13reast Health Project in Maryland Mautner Project for Lesbians $237,847 with Cancer The Johns Hopkins University $249,442 13reast Cancer Control: Needs University of Southern $248,483 and Practices of African Mississippi American Women and Their Providers Genetic Epidemiology of Wayne State University $249,493 13reast Cancer in African Americans Impact of Culture on 13reast Georgetown University $249,998 Cancer Screening in Chinese American Women Project Hoffnung: Delivering Hope with Culturally Appropriate 13reast Health to Amish and Mennonite Communities University of Utah College of $249,969 Nursing "Comadre A Comadre" A University of New Mexico $250,000 One-on-One Peer Support Project for Hispanic Women with 13reast Cancer Not Yet Well: the Self Management of Post-Treatment Symptoms by 13reast Cancer Survivors University of California, Los $248,183 Angeles
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From page 219... ...
ancT the Bristol Meyers Squibb Foundation in which APOS will provide a core online curriculum ancT an examination to those who wish to acicT qualifications in psychosocial oncology. Counselors in Employment Assistance Programs ancT family service organizations, aireacly trained in counseling shouicT be rather easily trained in psychosocial issues in oncology.
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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.
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From page 221... ...
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.
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From page 222... ...
Although these results shouicI not be interpreted as proof of benefit only in early disease, they point to the neecI for more formal evaluation in the metastatic setting. Because it is possible that some women may benefit more from certain interventions anti, incleecI, that certain interventions may benefit certain types of women to a greater extent than others, research is clesirable to further examine the patient characteristics that are predictive of greatest benefit of psychosocial interventions in breast cancer.
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From page 223... ...
Given the nature ancI wiclespreacI availability of peer support, the use of ranclomizecI clesigns may be challenging; however, evaluation using the strongest methoclology possible is neeclecI. Evaluating Novel Interventions There is growing interest among breast cancer patients ancI their families in the potential benefits of non-traclitional, complementary ancI alternative medicine approaches to psychosocial support.
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From page 224... ...
Furthermore, the stanciarcI psychosocial measurement instruments clo not aciciress all of the outcomes that are of interest in psychosocial intervention trials in breast cancer. A critical review is neeclecI to identify clomains anti attributes that are not well aciciressecI by well characterized questionnaires commonly used in breast cancer psychosocial intervention studies (e.g., cognitive functioning)
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From page 225... ...
Applicability of Finclings from Other Research to Women with Breast Cancer In aciclition to the psychosocial research concluctecI in breast cancer patients reviewed here, there is also a large body of literature describing psychosocial research in other cancer types ancI 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.
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From page 226... ...
These might inclucle: · Collaborative practices in which a psychologist or other mental health provider forms a partnership with an office-basecI 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" mocle! of clinical practice; · Breast cancer nurse managers who provide case management, eclucation, anti supportive care within oncology practices; · Novel moclels 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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From page 227... ...
This might include: · Further clevelopment of simple, rapicI screening tools for identifying the patient with distress in outpatient offices ancI training of primary oncology teams in diagnosis of distress that exceeds the "expected" anti when referral to supportive services shouicI be macle; · Studies that assess the relative effectiveness of various psychosocial interventions, using population-basecI patient samples of adequate size, the timing ancI duration of interventions, ancI innovative ancI inexpensive mocles of administration (e.g., Internet-basecI approaches) ; · A consensus conference to clevelop a battery of stanciarcI instruments for outcome measures to permit comparison of ciata from studies carried out by different research groups; · Organization of a psychosocial clinical trials group in which a network of researchers couicI aciciress key questions in multicenter studies that wouicI allow access to large, population-basecI samples; · Clinical trials of psychosocial interventions that are concluctecI within routine breast cancer care in which cost ancI quality of life are outcome measures; · A registry of ongoing psychosocial research/trials to assist researchers in identifying ancI tracking new areas of study.
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From page 228... ...
2000c. Effects of a structured psychiatric intervention on immune function of cancer patients.
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