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Cancer research: Future agendas for women's health
Cancer Research: Future Agendas for W o m e n ' s Health Nancy FugateWoods
This report reviews the national research priorities for women's health, focusing on future research needed to address women's experiences with cancer. The agenda for cancer research was considered in light of recent efforts of the Office of Women's Health Research of the National Institutes of Health to help set an agenda to guide future work. Nursing's contribution to developing science to support women's health care is also addressed.
Copyright © 1995 by W.B. Saunders Company
N THE PAST 10 YEARS, women's health has captured the public's attention. This began with a series of newsworthy events involving the National Institutes of Health (NIH). In the late 1980's the United States Public Health Service (USPHS) Task Force on Women's Health Issues published a two volume report on women's health. Among the recommendations of the Task Force was that "biomedical and behavioral research should be expanded to insure emphasis on those conditions and diseases unique to, or more prevalent in, women in all age groups." In addition, the Task Force emphasized those conditions in which circumstances for women were unique, the interventions were different for women than for men, or the health risks were greater for a woman than for a man.2 A series of events occurring after the publication of the Task Force Report stimulated the formation of the Office of Research on Women's Health (ORWH) and the eventual development of the NIH Women's Health Research Agenda. In 1986, the NIH Advisory Committee on Women' s Health recommended that investigators include women in studies, especially in clinical trials; explain exclusion of women from their proposals when that was seen as appropriate; and evaluate gender differences in their findings. In 1989 Congress requested a Government Accounting Office (GAO) study of the NIH implementation of this policy. The GAO study revealed that the policy was not being implemented and that only $778 million (13.5%) of the NIH budget was spent on women's health issues. 3 In 1990 the Congressional Caucus on Women's Issues drafted the Women's Health Equity Act. In September, 1990, the House and Senate conducted hearings on women's health research being funded by the NIH. The Office of Research on Women's Health
I
Seminars in Oncology Nursing, Vol 11, No 2 (May), 1995: pp 143-147
(ORWH) was created within the Office of the Director, NIH, shortly after the hearings began in September 1990. Its mandate is to strengthen and enhance prevention, diagnosis, and treatment of illness in women and to enhance research related to diseases and conditions that affect women. The ORWH has three objectives. First is to ensure that issues pertaining to women are adequately addressed, including "diseases, disorders, and conditions that are unique to, more prevalent among, or far more serious in women, or for which there are different risk factors or interventions for women than for m e n . " Second, is to ensure appropriate participation by women in clinical research, especially clinical trials. Third, is to foster increased involvement of women in biomedical research, especially in decision-making roles in clinical medicine and research environments. 4 In August 1990, the NIH Guide to Grants and Contracts published the NIH policy on inclusion of women in studies. As of February 1991, no PHS grant applications were accepted unless women were adequately represented in clinical research, except in cases in which their exclusion was justified. The ORWH arranged with the Institute of
From the School of Nursing and Center for Women's Health Research, University of Washington, Seattle, WA. Nancy Fugate Woods, PhD, FAAN, RN: Professor, Parent and Child Nursing, School of Nursing, Director, Center for Women's Health Research, University of Washington, Seattle. This paper was presented at the American Cancer Society's Third National Conference on Cancer Nursing Research and appears in the Proceedings of the meeting, i Address reprint requests to Nancy Fugate Woods, PhD, FAAN, RN, Professor, Parent and Child Nursing, School of Nursing, University of Washington, SM-23, Seattle, WA 98195. Copyright © 1995 by W.B. Saunders Company 0749-2081/95/1102-000955.00/0
143
144
Medicine to address legal and ethical barriers to inclusion of women in clinical studies. 4 In 1991 a NIH Task Force on Opportunities for Research on Women's Health was created and charged with assessing the current status of women's health research, identifying research opportunities and gaps in knowledge, and developing a NIH-wide plan for future directions for women's health research. The Task Force, in conjunction with ORWH staff, invited public and scientific deliberations in developing the research agenda. 4 Over 60 advocates for women's health, as well as scientists and health professionals, presented verbal testimony, and 40 other advocacy groups and individuals submitted written testimony to the Task Force. The NIH Office for Women's Health Research's summary of the public testimony indicated that high priority should be given to cancer prevention (especially breast cancer), cardiovascular disease, osteoporosis, autoimmune disease, sexually transmitted disease, work site safety, domestic violence, postnatal care, human immunodeficiency virus and acquired immunodeficiency syndrome, and consequences of women's hormonal cycles for pharmacotherapy. In addition, there was a strong emphasis on the need for behavioral research. The diversity of women's health needs was also stressed, reflecting needs of special populations such as black, Hispanic, and poor women.
The Workshop on Opportunities for Research on Women's Health held in Hunt Valley, MD, September 1991, included experts in basic and clinical sciences, women's health clinicians, and representatives of women's organizations. The goal was to develop recommendations for research activities on behalf of all US women. The framework for development of a research agenda involved working groups to address major divisions of the lifespan and scientific areas that cut across women's health throughout life. 4 The report, Opportunities for Research on Women's Health, 4 includes a summary from each of the ten working groups. Life span-focused groups addressed birth to young adulthood, young adulthood to perimenopausal years, perimenopausal to mature years, and mature years. Groups also addressed cross-cutting areas of science: reproductive biology, early developmental biology, aging processes, cardiovascular function and disease, malignancy and immune function, and infec-
NANCY FUGATE WOODS
tious diseases. The remainder of this article focuses on the recommendations from the group whose topic was malignancy. WOMEN AND CANCER
Cancer is the leading cause of premature death in women. The deaths recorded in 1990 for women with cancer totaled 255,000. 5 The leading cause of cancer deaths in women is lung cancer with approximately 62,000 deaths projected for 1995. 4 Another 46,000 women will die of breast cancer, 14,500 from ovarian cancer, 10,700 from uterine cancer, and 28,100 from colorectal cancer. 5 Breast Cancer
Breast cancer accounts for about one third of all malignancies in women. 5 The incidence has increased significantly from 1 in 20 to 1 in 8 women. Mortality rates have been concomitantly increasing as a result, but additional factors include lack of progress in breast cancer in older women, those with low incomes, or black women. 4 The research agenda in breast cancer needs to focus on etiology and diagnosis. This could include trials that focus on genetic causes in breast cancer families. The role of growth factors, exogenous hormones, and environmental factors in breast cancer etiology need to be explored. Focusing attention on identification of premalignant markers will facilitate diagnosis and evaluation of treatment response. Research on breast cancer prevention needs to attend to the effects of dietary modification, including development of biological markers for dietary intake that are an indication of nutrient intake. Prevention trials are needed, and currently a controversial trial of tamoxifen for prevention of breast cancer is under way. Early detection of breast cancer with screening mammography is possible, but women from underrepresented ethnic groups, low income groups, and medically underserved populations are not using these services. Research needs to focus on how and why this underutilization is occurring, as well as potential strategies to improve detection practices. The development of early markers for breast cancer that are detectable in blood or urine may prove useful in addition to mammography. There is a need for breast cancer trials that include investigation of adjuvant hormonal and che-
CANCER RESEARCH:FUTURE AGENDA
motherapy regimens, and autologous bone marrow transplants and dose intensity trials for high risk individuals and those with progressive disease. Additional research recommendations included investigation of treatment timing such as surgery to coincide with menstrual cycle phase, research on use of growth factors as therapy targets, tumor immunology, and concurrent therapies such as hormones. Psychosocial interventions to enhance both survival and quality of life appeared on the research agenda for therapies. Cervical Cancer Research was recommended on the etiology of cervical cancer. The role human papilloma virus (HPV) plays in the development of cervical cancer and the sexual practices that expose young women to HPV need to be better understood. Follow-up services for women who are found to have precancerous lesions during screening requires new approaches. The identification of oncogenes in families where there are clusters of cervical cancer is also important. Finally, investigation of vitamin deficiencies, such as folic acid and retinoic acid, and the influence of exogenous hormones on cervical cancer is needed. Uterine Cancer Studies of the consequences of estrogen and progesterone therapy and ocurrence of endometrial cancer are needed. In addition, studies of the risk of tamoxifen treatment and endometrial cancer are needed to weigh the benefits and risks of treatment with tamoxifen for breast cancer prevention. Genetic linkage studies for uterine cancer among families are also recommended. Ovarian Cancer The group recommended genetic studies of high risk families and studies of the effects of oral contraceptive and hormone therapy on the development of ovarian cancer. Screening and early detection methods for ovarian cancer are extremely important given the high fatality caused by the advanced stage of ovarian cancer when it is usually diagnosed. An evaluation of effectiveness of screening, such as CA 125 antigen, transvaginal ultrasound, and pelvic exam is important. Treatment trials with novel monoclonal antibodies for ovarian cancer are needed.
145
Colorectal Cancer Although colorectal cancer is not unique to women, 67,500 women will be diagnosed in 1995 with colorectal cancer, and 28,100 women will die from it. Studies are needed of women's knowledge, attitudes, and behavior regarding early use of early detection and screening methods for colorectal cancer. Additional areas for research include genetic factors and premalignant markers such as those for adenomatous polyposis, use of screening for occult blood as a diagnostic tool, prevention trials including dietary modification (low fat, high fiber), vitamin and retinoids, and the development of endpoints for dietary and chemoprevention trials. Finally, studies of therapy for advanced disease need to be implemented to improve upon available treatment options. Lung Cancer Lung cancer has recently surpassed breast cancer as the leading cause of cancer deaths in women. Approximately 62,000 women will die of lung cancer in 1995, and 72,000 women will be living with lung cancer. 4 Development of interventions for smoking cessation, such as social support, and development of culturally-sensitive and age-sensitive interventions should be given high priority. Additional areas to study include methods to counteract the tobacco industry's advertising to teens, Hispanics, and blacks, studies of the pharmacologic effects of nicotine in women in order to understand the relation of gender, mood modulation and smoking, and the differences between women and men in weight gain following smoking cessation. The identification of women at high risk for development of lung cancer through testing such as sputum analyses is needed as are chemoprevention trials, such as those using beta carotene. SPECIAL ISSUES
Two issues are of special importance in the women's health research agenda for cancer. The first requires increased attention to the interaction of ethnicity and cancer prevention and control. This concern is prompted by differential rates of and outcomes for cancers in women from underrepresented ethnic groups. Access to health care, poverty, and environmental exposures may all
146
NANCY FUGATE WOODS
contribute to the higher incidence and lower survival rates experienced by underrepresented ethnic groups and the poor. The second issue is the controversial relationship between environmental factors and cancer etiology. Recently persistent environmental contaminants with estrogenic potential, such as chlorinated hydrocarbons including DDT, PCBs, and TCDD, have been identified as possible risk factors for cancer in women. Because of bioaccumulation of environmental agents that are lipophilic (accumulate in fatty tissue) and are mobilized when fat stores are mobilized during lactation and dieting, women may be at special risk when exposed to these chemicals. 6'7 Investigation and attention to radiation exposures from the environment and therapeutic exposures may provide a basis for understanding risks of both. The environmental justice movement, working to assess and correct exposures of people who lack resources to correct health damaging exposures, is creating a new awareness of the nonrandom nature of exposures. For example, low income populations are likely to live in areas subject to environmental exposures. 8 NURSING RESEARCH ABOUT WOMEN AND CANCER
Although the Hunt Valley conferees did not create a separate nursing research agenda for women and cancer, complementary studies would enhance women's health outcomes. Cancer prevention efforts have largely been limited to those directed at individuals, eg, stopping smoking and changing dietary intake patterns. New efforts directed at groups and communities are needed, such as workplace interventions and community media campaigns. Understanding the processes by which groups and organizations can alter risk for cancer, such as taking collective action to modify environmental hazards or monitoring workplace exposure safety practices, is critical to public health practice. Identification of individuals at risk provides a population eligible for chemoprevention research. Use of cancer screening opportunities remains problematic for some women. Understanding the meaning of screening to women is of paramount importance. Women from high risk groups may see screening as the beginning of a pathway toward death, particularly when others in their communi-
ties are diagnosed with late stage disease. Nursing research should focus on barriers to screening and making screening available. Systematic elimination of screening measures such as breast and pelvic exams and pap smears from physical exams suggest the need for further understanding of why health professionals do not use these measures. Payment mechanisms by third parties and inadequate education about impact of outcomes on women's health may account for some of the underutilization of screening. Development of new technologies that allow women to use a self-care approach to enhance screening, participate in work site screening and health education efforts, and learn about cancer in ethnically sensitive ways could enhance early diagnosis and therapy. For many years government regulations existed that have excluded women from drug trials. 9 As a result, questions related to women's unique responses to some therapies remain unexplored. Understanding gender differences in response to therapy is critical as a basis for managing symptoms related to drugs. Models of care that address women's multiple role responsibilities, poverty, and age need to be developed and tested. Questions that need to be addressed include what models of care are optimum for women living with cancer who are employed, parents, and caregivers for older family members? How does care need to be modified for the majority of people with cancer who are elderly? What models of care are most effective for women with few financial resources? Because multiple roles, old age, and poverty frequently coexist, these questions must be addressed simultaneously. Finally, women must be involved in designing clinical trials of chemoprevention and therapeutic agents. This may enhance the success of such programs. SUMMARY
The NIH Women's Health Research Agenda can serve as a starting point for studies of cancer in women. Nursing research focusing on women's experiences with cancer can complement important understanding about women's cancer experiences, their responses to cancer therapies, beliefs about engaging in preventive activities, using early detection methods, responses to diagnostic evaluation, and models of nursing care to support women throughout their cancer experiences.
CANCER RESEARCH: FUTURE AGENDA
147
REFERENCES
1. Woods NF: Cancer research: An agenda for women. Proceedings of the Third National Conference on Cancer Nursing Research. Atlanta, GA, American Cancer Society, 1995 (in press) 2. United States Public Health Service Task Force on Women's Health Issues: Women's Health: Report of the Public Health Service, vol 2. USDHHS Pub No. 88-50206. Washington, DC, United States Public Health Service, 1987 3. NIH adjusts attitudes toward women. Science 249:1374, 1990 4. National Institutes of Health: Opportunities for Research
on Women's Health. Bethesda, MD, National Institutes of Health, 1992 5. American Cancer Society: Cancer Facts and Figures 1995. Atlanta, GA, American Cancer Society, 1995 6. Krieger N: DDT and breast cancer: The verdict isn't in. J Natl Cancer Inst 86:576-577, 1994 7. MacMahon B: Pesticide residues and breast cancer? J Natl Cancer Inst 86:572-573, 1994 8. Bullard R: Dumping in Dixie: Race, class, environmental quality. Boulder, CO, Westview, 1990 9. American College of Clinical Pharmacy: Women as research subjects. Pharmacotherapy 13:534-542, 1993
This report reviews the national research priorities for women's health, focusing on future research needed to address women's experiences with cancer. The agenda for cancer research was considered in light of recent efforts of the Office of Women's Health Research of the National Institutes of Health to help set an agenda to guide future work. Nursing's contribution to developing science to support women's health care is also addressed.
Copyright © 1995 by W.B. Saunders Company
N THE PAST 10 YEARS, women's health has captured the public's attention. This began with a series of newsworthy events involving the National Institutes of Health (NIH). In the late 1980's the United States Public Health Service (USPHS) Task Force on Women's Health Issues published a two volume report on women's health. Among the recommendations of the Task Force was that "biomedical and behavioral research should be expanded to insure emphasis on those conditions and diseases unique to, or more prevalent in, women in all age groups." In addition, the Task Force emphasized those conditions in which circumstances for women were unique, the interventions were different for women than for men, or the health risks were greater for a woman than for a man.2 A series of events occurring after the publication of the Task Force Report stimulated the formation of the Office of Research on Women's Health (ORWH) and the eventual development of the NIH Women's Health Research Agenda. In 1986, the NIH Advisory Committee on Women' s Health recommended that investigators include women in studies, especially in clinical trials; explain exclusion of women from their proposals when that was seen as appropriate; and evaluate gender differences in their findings. In 1989 Congress requested a Government Accounting Office (GAO) study of the NIH implementation of this policy. The GAO study revealed that the policy was not being implemented and that only $778 million (13.5%) of the NIH budget was spent on women's health issues. 3 In 1990 the Congressional Caucus on Women's Issues drafted the Women's Health Equity Act. In September, 1990, the House and Senate conducted hearings on women's health research being funded by the NIH. The Office of Research on Women's Health
I
Seminars in Oncology Nursing, Vol 11, No 2 (May), 1995: pp 143-147
(ORWH) was created within the Office of the Director, NIH, shortly after the hearings began in September 1990. Its mandate is to strengthen and enhance prevention, diagnosis, and treatment of illness in women and to enhance research related to diseases and conditions that affect women. The ORWH has three objectives. First is to ensure that issues pertaining to women are adequately addressed, including "diseases, disorders, and conditions that are unique to, more prevalent among, or far more serious in women, or for which there are different risk factors or interventions for women than for m e n . " Second, is to ensure appropriate participation by women in clinical research, especially clinical trials. Third, is to foster increased involvement of women in biomedical research, especially in decision-making roles in clinical medicine and research environments. 4 In August 1990, the NIH Guide to Grants and Contracts published the NIH policy on inclusion of women in studies. As of February 1991, no PHS grant applications were accepted unless women were adequately represented in clinical research, except in cases in which their exclusion was justified. The ORWH arranged with the Institute of
From the School of Nursing and Center for Women's Health Research, University of Washington, Seattle, WA. Nancy Fugate Woods, PhD, FAAN, RN: Professor, Parent and Child Nursing, School of Nursing, Director, Center for Women's Health Research, University of Washington, Seattle. This paper was presented at the American Cancer Society's Third National Conference on Cancer Nursing Research and appears in the Proceedings of the meeting, i Address reprint requests to Nancy Fugate Woods, PhD, FAAN, RN, Professor, Parent and Child Nursing, School of Nursing, University of Washington, SM-23, Seattle, WA 98195. Copyright © 1995 by W.B. Saunders Company 0749-2081/95/1102-000955.00/0
143
144
Medicine to address legal and ethical barriers to inclusion of women in clinical studies. 4 In 1991 a NIH Task Force on Opportunities for Research on Women's Health was created and charged with assessing the current status of women's health research, identifying research opportunities and gaps in knowledge, and developing a NIH-wide plan for future directions for women's health research. The Task Force, in conjunction with ORWH staff, invited public and scientific deliberations in developing the research agenda. 4 Over 60 advocates for women's health, as well as scientists and health professionals, presented verbal testimony, and 40 other advocacy groups and individuals submitted written testimony to the Task Force. The NIH Office for Women's Health Research's summary of the public testimony indicated that high priority should be given to cancer prevention (especially breast cancer), cardiovascular disease, osteoporosis, autoimmune disease, sexually transmitted disease, work site safety, domestic violence, postnatal care, human immunodeficiency virus and acquired immunodeficiency syndrome, and consequences of women's hormonal cycles for pharmacotherapy. In addition, there was a strong emphasis on the need for behavioral research. The diversity of women's health needs was also stressed, reflecting needs of special populations such as black, Hispanic, and poor women.
The Workshop on Opportunities for Research on Women's Health held in Hunt Valley, MD, September 1991, included experts in basic and clinical sciences, women's health clinicians, and representatives of women's organizations. The goal was to develop recommendations for research activities on behalf of all US women. The framework for development of a research agenda involved working groups to address major divisions of the lifespan and scientific areas that cut across women's health throughout life. 4 The report, Opportunities for Research on Women's Health, 4 includes a summary from each of the ten working groups. Life span-focused groups addressed birth to young adulthood, young adulthood to perimenopausal years, perimenopausal to mature years, and mature years. Groups also addressed cross-cutting areas of science: reproductive biology, early developmental biology, aging processes, cardiovascular function and disease, malignancy and immune function, and infec-
NANCY FUGATE WOODS
tious diseases. The remainder of this article focuses on the recommendations from the group whose topic was malignancy. WOMEN AND CANCER
Cancer is the leading cause of premature death in women. The deaths recorded in 1990 for women with cancer totaled 255,000. 5 The leading cause of cancer deaths in women is lung cancer with approximately 62,000 deaths projected for 1995. 4 Another 46,000 women will die of breast cancer, 14,500 from ovarian cancer, 10,700 from uterine cancer, and 28,100 from colorectal cancer. 5 Breast Cancer
Breast cancer accounts for about one third of all malignancies in women. 5 The incidence has increased significantly from 1 in 20 to 1 in 8 women. Mortality rates have been concomitantly increasing as a result, but additional factors include lack of progress in breast cancer in older women, those with low incomes, or black women. 4 The research agenda in breast cancer needs to focus on etiology and diagnosis. This could include trials that focus on genetic causes in breast cancer families. The role of growth factors, exogenous hormones, and environmental factors in breast cancer etiology need to be explored. Focusing attention on identification of premalignant markers will facilitate diagnosis and evaluation of treatment response. Research on breast cancer prevention needs to attend to the effects of dietary modification, including development of biological markers for dietary intake that are an indication of nutrient intake. Prevention trials are needed, and currently a controversial trial of tamoxifen for prevention of breast cancer is under way. Early detection of breast cancer with screening mammography is possible, but women from underrepresented ethnic groups, low income groups, and medically underserved populations are not using these services. Research needs to focus on how and why this underutilization is occurring, as well as potential strategies to improve detection practices. The development of early markers for breast cancer that are detectable in blood or urine may prove useful in addition to mammography. There is a need for breast cancer trials that include investigation of adjuvant hormonal and che-
CANCER RESEARCH:FUTURE AGENDA
motherapy regimens, and autologous bone marrow transplants and dose intensity trials for high risk individuals and those with progressive disease. Additional research recommendations included investigation of treatment timing such as surgery to coincide with menstrual cycle phase, research on use of growth factors as therapy targets, tumor immunology, and concurrent therapies such as hormones. Psychosocial interventions to enhance both survival and quality of life appeared on the research agenda for therapies. Cervical Cancer Research was recommended on the etiology of cervical cancer. The role human papilloma virus (HPV) plays in the development of cervical cancer and the sexual practices that expose young women to HPV need to be better understood. Follow-up services for women who are found to have precancerous lesions during screening requires new approaches. The identification of oncogenes in families where there are clusters of cervical cancer is also important. Finally, investigation of vitamin deficiencies, such as folic acid and retinoic acid, and the influence of exogenous hormones on cervical cancer is needed. Uterine Cancer Studies of the consequences of estrogen and progesterone therapy and ocurrence of endometrial cancer are needed. In addition, studies of the risk of tamoxifen treatment and endometrial cancer are needed to weigh the benefits and risks of treatment with tamoxifen for breast cancer prevention. Genetic linkage studies for uterine cancer among families are also recommended. Ovarian Cancer The group recommended genetic studies of high risk families and studies of the effects of oral contraceptive and hormone therapy on the development of ovarian cancer. Screening and early detection methods for ovarian cancer are extremely important given the high fatality caused by the advanced stage of ovarian cancer when it is usually diagnosed. An evaluation of effectiveness of screening, such as CA 125 antigen, transvaginal ultrasound, and pelvic exam is important. Treatment trials with novel monoclonal antibodies for ovarian cancer are needed.
145
Colorectal Cancer Although colorectal cancer is not unique to women, 67,500 women will be diagnosed in 1995 with colorectal cancer, and 28,100 women will die from it. Studies are needed of women's knowledge, attitudes, and behavior regarding early use of early detection and screening methods for colorectal cancer. Additional areas for research include genetic factors and premalignant markers such as those for adenomatous polyposis, use of screening for occult blood as a diagnostic tool, prevention trials including dietary modification (low fat, high fiber), vitamin and retinoids, and the development of endpoints for dietary and chemoprevention trials. Finally, studies of therapy for advanced disease need to be implemented to improve upon available treatment options. Lung Cancer Lung cancer has recently surpassed breast cancer as the leading cause of cancer deaths in women. Approximately 62,000 women will die of lung cancer in 1995, and 72,000 women will be living with lung cancer. 4 Development of interventions for smoking cessation, such as social support, and development of culturally-sensitive and age-sensitive interventions should be given high priority. Additional areas to study include methods to counteract the tobacco industry's advertising to teens, Hispanics, and blacks, studies of the pharmacologic effects of nicotine in women in order to understand the relation of gender, mood modulation and smoking, and the differences between women and men in weight gain following smoking cessation. The identification of women at high risk for development of lung cancer through testing such as sputum analyses is needed as are chemoprevention trials, such as those using beta carotene. SPECIAL ISSUES
Two issues are of special importance in the women's health research agenda for cancer. The first requires increased attention to the interaction of ethnicity and cancer prevention and control. This concern is prompted by differential rates of and outcomes for cancers in women from underrepresented ethnic groups. Access to health care, poverty, and environmental exposures may all
146
NANCY FUGATE WOODS
contribute to the higher incidence and lower survival rates experienced by underrepresented ethnic groups and the poor. The second issue is the controversial relationship between environmental factors and cancer etiology. Recently persistent environmental contaminants with estrogenic potential, such as chlorinated hydrocarbons including DDT, PCBs, and TCDD, have been identified as possible risk factors for cancer in women. Because of bioaccumulation of environmental agents that are lipophilic (accumulate in fatty tissue) and are mobilized when fat stores are mobilized during lactation and dieting, women may be at special risk when exposed to these chemicals. 6'7 Investigation and attention to radiation exposures from the environment and therapeutic exposures may provide a basis for understanding risks of both. The environmental justice movement, working to assess and correct exposures of people who lack resources to correct health damaging exposures, is creating a new awareness of the nonrandom nature of exposures. For example, low income populations are likely to live in areas subject to environmental exposures. 8 NURSING RESEARCH ABOUT WOMEN AND CANCER
Although the Hunt Valley conferees did not create a separate nursing research agenda for women and cancer, complementary studies would enhance women's health outcomes. Cancer prevention efforts have largely been limited to those directed at individuals, eg, stopping smoking and changing dietary intake patterns. New efforts directed at groups and communities are needed, such as workplace interventions and community media campaigns. Understanding the processes by which groups and organizations can alter risk for cancer, such as taking collective action to modify environmental hazards or monitoring workplace exposure safety practices, is critical to public health practice. Identification of individuals at risk provides a population eligible for chemoprevention research. Use of cancer screening opportunities remains problematic for some women. Understanding the meaning of screening to women is of paramount importance. Women from high risk groups may see screening as the beginning of a pathway toward death, particularly when others in their communi-
ties are diagnosed with late stage disease. Nursing research should focus on barriers to screening and making screening available. Systematic elimination of screening measures such as breast and pelvic exams and pap smears from physical exams suggest the need for further understanding of why health professionals do not use these measures. Payment mechanisms by third parties and inadequate education about impact of outcomes on women's health may account for some of the underutilization of screening. Development of new technologies that allow women to use a self-care approach to enhance screening, participate in work site screening and health education efforts, and learn about cancer in ethnically sensitive ways could enhance early diagnosis and therapy. For many years government regulations existed that have excluded women from drug trials. 9 As a result, questions related to women's unique responses to some therapies remain unexplored. Understanding gender differences in response to therapy is critical as a basis for managing symptoms related to drugs. Models of care that address women's multiple role responsibilities, poverty, and age need to be developed and tested. Questions that need to be addressed include what models of care are optimum for women living with cancer who are employed, parents, and caregivers for older family members? How does care need to be modified for the majority of people with cancer who are elderly? What models of care are most effective for women with few financial resources? Because multiple roles, old age, and poverty frequently coexist, these questions must be addressed simultaneously. Finally, women must be involved in designing clinical trials of chemoprevention and therapeutic agents. This may enhance the success of such programs. SUMMARY
The NIH Women's Health Research Agenda can serve as a starting point for studies of cancer in women. Nursing research focusing on women's experiences with cancer can complement important understanding about women's cancer experiences, their responses to cancer therapies, beliefs about engaging in preventive activities, using early detection methods, responses to diagnostic evaluation, and models of nursing care to support women throughout their cancer experiences.
CANCER RESEARCH: FUTURE AGENDA
147
REFERENCES
1. Woods NF: Cancer research: An agenda for women. Proceedings of the Third National Conference on Cancer Nursing Research. Atlanta, GA, American Cancer Society, 1995 (in press) 2. United States Public Health Service Task Force on Women's Health Issues: Women's Health: Report of the Public Health Service, vol 2. USDHHS Pub No. 88-50206. Washington, DC, United States Public Health Service, 1987 3. NIH adjusts attitudes toward women. Science 249:1374, 1990 4. National Institutes of Health: Opportunities for Research
on Women's Health. Bethesda, MD, National Institutes of Health, 1992 5. American Cancer Society: Cancer Facts and Figures 1995. Atlanta, GA, American Cancer Society, 1995 6. Krieger N: DDT and breast cancer: The verdict isn't in. J Natl Cancer Inst 86:576-577, 1994 7. MacMahon B: Pesticide residues and breast cancer? J Natl Cancer Inst 86:572-573, 1994 8. Bullard R: Dumping in Dixie: Race, class, environmental quality. Boulder, CO, Westview, 1990 9. American College of Clinical Pharmacy: Women as research subjects. Pharmacotherapy 13:534-542, 1993