A Publication of the
Jacobs Institute of Women's Health
June, 1998 - Volume 6, Number 2
The themes that emerged during the seminar "Neither Prevention nor Cure: Managed Care for Women with Chronic Conditions" are some that have cropped up repeatedly over the course of the managed care seminar series: the importance of multidisciplinary, integrated care to successful patient management; patient empowerment and autonomy; and the inequities women face in the health care arena, especially women of color.
In fact, Arlene S. Bierman, MD, MS, and Carolyn M. Clancy, MD, both of the Agency for Health Care Policy and Research, titled their presentation "New Words to Old Music" to underscore the fact that the concepts behind managing chronic disease among women are hardly new ones. But, as Dr. Clancy put it, "Knowing what to do is not the same as knowing how to do it."
Outlining the findings of the paper "Women's Health and Chronic Disease: Opportunities and Challenges," written by Drs. Bierman and Clancy and commissioned by the Jacobs Institute, Dr. Clancy said we know health care is influenced by non-clinical determinants, such as race, gender, and access. We also know women are more likely then men to experience chronic conditions and to be underinsured.
Dr. Clancy asserted the basic principles for improving disease management for women with chronic conditions are understood: integrating preventive, acute, and rehabilitative care with a focus on the health of defined populations. What the health care system needs now are innovative clinical models for comprehensive care.
"Women's health is the ultimate test case for disease management," Dr. Clancy concluded. "If we can get it right for women's health, than we can go full steam ahead."
Dr. Bierman pointed out why the topic of chronic illness has come to the forefront. The combination of an aging population and medical advances means more people live longer and often live their later years with some chronic conditions. Some 99 million Americans have a chronic condition, and 70% of U.S. health care expenditures go toward care for chronic illnesses, she said.
Successful disease management requires active involvement with the patient, active follow-up, and a continuum of supportive services, said Dr. Bierman. She also presented an extensive checklist for evaluating disease management programs that looks at everything from a program's developer to its place in the community.
"The components of disease management are not controversial, but challenges remain," said Bierman, echoing her coauthor.
In presenting the paper "Chronic Disease, Women's Health, and 'Disease Management' ... the Latest Trend?" by Felicia Gevirtz, MSPH, Robert R. Corrato, MD, David Nash, MD, MBA, and Peter Chodoff, MD, MPH, all of Thomas Jefferson University Hospital, Dr. Chodoff also emphasized the importance of multidisciplinary teamwork. "If we can get that concept across, we can solve a lot of our problems," he said.
Dr. Chodoff presented definitions of some of the terms used in developing managed care policies and programs, such as clinical guidelines, performance measures, total quality management, and gold standard. Among the barriers to integrated disease management is the current structure of medical schools by distinct departments, which encourages separation and competition over collaboration. Also, the capitation model for payment encourages practitioners to underuse medical technology and resources. These and other barriers need to be addressed.
Panelist Debra R. Lappin, Esq., chair of the Arthritis Foundation, pointed out, "We need to underscore more dramatically the powerful role the patient must play." She reported the results of a study in which patients with arthritis were provided education, given a sense of empowerment, and taught to feel less helpless. As a result, even though the disease continued to progress, visits to physicians declined by 43%.
Programs that help patients view their health plan as a tool to use as needed rather than their sole salvation can significantly affect the cost of providing care. "The patient must view herself as the most important provider on the multidisciplinary team," she concluded.
Lappin also illustrated the growing role of voluntary health agencies. The American Heart Association's media campaign to prevent smoking and the Office of the Surgeon General's initiative to encourage exercise are two examples of education and intervention on a community level.
Judy Panko Reis, MA, MS, co-executive director of the Health Resource Center for Women with Disabilities, described the success of her organization in working with the Rehabilitation Institute of Chicago to create a clinic for disabled women that focuses on issues often overlooked by most health care providers. She described how disabled women have been denied basic care, such as pelvic exams, mammograms, and perinatal care.
"The basic mythology ... was that disabled women were asexual and not capable of reproducing, or if they were, there was a threat of producing damaged offspring," she said. She described how disabled women in managed care programs face basic access problems-everything from a lack of ramps and elevators to providers who refuse to lift a woman out of a wheelchair and onto an examining table. Managed care offers inadequate coverage for physical rehabilitation, durable medical equipment, expert therapists, and mental health care, which help the patient toward the goal of independent living and enhance her quality of life, said Panko Reis.
With her own organization and others, however, Panko Reis sees a growing awareness of the needs of disabled women. She reported that the American Medical Association is seeking reports from consumers and physicians on problems encountered by people with disabilities.
Representing managed care, Andrea LaCroix, PhD, a scientific investigator for Group Health Cooperative of Puget Sound, used an example of an osteoporosis screening initiative in development to illustrate the challenges faced by managed care organizations in implementing disease management and prevention programs.
Obstacles included a lack of evidence on identifying high risk patients or supporting the usefulness of screening and prevention methods. Behavioral risk factors, such as sedentary lifestyle, can be helpful predictors for disease, but such information often is not captured. Also, patients need follow-up and feedback to effectively benefit from prevention and management programs, a costly and time-consuming aspect of health are. Among the solutions to the various barriers, Group Health Cooperative created an extensive questionnaire specifically for osteoporosis risk and provided individualized feedback in response.
From the insurer's point of view, Dr. LaCroix summarized, we need more prevention strategies with evidence about long-term outcomes, clinical information that captures the necessary data, and materials to improve patients' decision-making skills.
In an open discussion, all of the panelists agreed that something needs to be done to negate the (primarily financial) disincentives to provide care. Dr. Chodoff pointed out that Medicare is already faced with the high cost of caring for those with chronic conditions, and the number of people in that category is growing. Other questions focused on outreach to underinsured, uninsured, and minority communities and strategies for educating patients and providers.
The managed care seminar series is supported by The Commonwealth Fund, The Henry J. Kaiser Family Foundation, Wyeth-Ayerst Laboratories, and Eli Lilly and Co. The final seminar in the series is scheduled for July 23 and will focus on quality improvement in managed care. Audiocassettes of the series are available; for more information, call the Jacobs Institute at 202-863-4990.
"Genetic testing is a powerful tool in protecting against cancer, but we must use this approach with care," warned Karen Johnson, a specialist in genetic counseling from Johns Hopkins University. Johnson spoke at a breakfast seminar March 26 in Washington, DC. She was the third presenter in the series "New Science for Age-Old Problems in Women's Health," sponsored by the Jacobs Institute.
One third of all women are expected to develop cancer in their lifetime. On the positive side, cancer survival rates have improved in recent years, and 7.4 million Americans with a personal history of cancer are alive today. The challenge of the medical community is to detect cancer earlier, at stages that are more likely to respond to treatment. If more people participated in early screening, cancer survival rates would increase.
Genetic testing can play a part in these goals. "Some individuals are born with a predisposition to cancer," said Johnson. "We can now identify some of those individuals and take steps to increase surveillance or even offer surgical intervention to prevent cancer."
After giving the audience a crash course in genetics, Johnson described the features of inherited cancers that would help identify those who are candidates for genetic counseling: those whose family history includes several relatives with the same or related types of cancer and cancer occurring at a young age; the presence of a rare type of cancer, several cases of bilateral cancers (e.g., cancer in both ovaries), or multiple primary cancers; the absence of environmental risk factors that may explain the history of cancer in the family; and physical findings suggestive of a hereditary syndrome.
Such individuals might benefit from genetic testing and counseling-or they might not. Johnson described the ethical issues and practical dilemmas of the practice. Identification of a cancer-causing gene is not definitive evidence that a person will develop cancer. The fact that scientists can locate a gene is not necessarily related to a cure for cancer.
"Patients and providers overestimate the power of genetic testing," said Johnson. "We must acknowledge that we don't have all the answers." Those considering genetic testing should be educated about the limitations of testing, all the possible outcomes, and what to do with the results. "A negative result can be a relief, eliminating the need for frequent testing," said Johnson, "and a positive result can allow informed decision-making and the chance to make lifestyle changes before cancer develops. "There can also be profound psychological consequences, such as anger, depression, denial, anxiety for one's children, poor decision making, and genetic discrimination in employment and health insurance coverage," she noted.
"Eleven states have legislation regarding discrimination, and the Americans with Disabilities Act prohibits it," said Johnson, but to invoke that law, one must present a positive genetic test. She described a poll of support groups in which 22% of those who had a positive genetic test were denied health insurance, 25% were denied life insurance, and 13% faced job discrimination. Johnson stressed the importance of counseling individual patients, educating them about all the issues surrounding genetic testing, and taking into account their own personal situations. She predicted that in the near future, nurses, physicians, and social workers will be more involved in genetic counseling.
The Monsanto Company and Searle sponsored the seminar. The next seminar in the series is "Designer Estrogens;" it is scheduled for June 25 at the J.W. Mariott in Washington. Audiocassettes of the series are available; for more information, call the Jacobs Institute at 202-863-4990.
July 25-29, National Lesbian and Gay Health Conference and National AIDS/HIV Forum, San Francisco, CA. For more information, write the NLGHA Conference, PO Box 33022, Washington, DC 20033, or visit their web site at www.nlgha.org.
August 27-29, Gay and Lesbian Medical Association's Annual Symposium, Chicago, IL. For more information or to register, visit the GLMA web site at www.glma.org.
July 23, Managed Care Quality (sponsored by the Jacobs Institute of Women's Health), Washington, DC, 8:30 am-noon, J.W. Marriott. Call Julie Gonen at 202-863-4990 for more information.
Genetic Testing for Breast Cancer Risk: It's Your Choice, a video, companion brochure, and fact sheet created by the National Action Plan on Breast Cancer, is available to answer women's questions about genetic testing for breast and ovarian cancer. To obtain single copies of the kit or brochure, call the National Cancer Institute's Cancer Information Service at 1-800-4-CANCER. For bulk orders, call 301-468-6555, ext. 2140.
A Helping Hand: The Resource Guide for People with Cancer, 2nd ed., is a national guide created by Cancer Care, Inc., of services available to people with cancer. Copies are $3; for more information or to order, call Cancer Care, Inc., at 1-800-813-HOPE, or visit their web site at www.cancercare.org.
Robert Wood Johnson Community Health Leadership Program annually provides ten $100,000 awards to outstanding individuals to create or enhance health care programs for unserved or underserved communitites. Nominations are due September 16, 1998. For more information, write to CHLP, 30 Winter Street, Suite 920, Boston, MA 02108.
Menopause: A Guide to Health and Happiness, by ob/gyn James Huston, MD, addresses physiologic changes, alternative medicine, health concerns, treatments, and other issues surrounding menopause. The book is available at bookstores nationally or by calling Facts on File at 1-800-322-8755.
Successful Aging, by John W. Rowe, MD, and Robert L. Kahn, PhD, published by the Center for the Advancement of Health, the Gerontological Society of America, and the MacArthur Foundation, summarizes ten years of scientific research on aging. Written in everyday language, it redirects the focus on gerontology away from disease and disability to emphasize health, vitality, and productivity among seniors. For information, write the Center for the Advancement of Health at 2000 Florida Avenue, NW, Suite 210, Washington, DC 20009, or call 202-387-2829.
National Survey of Teens: Teens Talk About Dating, Intimacy, and Their Sexual Experiences, a summary of an in-depth survey conducted by the Henry J. Kaiser Family Foundation and YM teen magazine, is available by calling the Kaiser Family Foundation's publication request line at 1-800-656-4533 (ask for no. 1373).
The Role of Physician Assistants, Nurse Practitioners, and Nurse-Midwives in Providing Abortions: Strategies for Expanding Abortion Access details the results of a National Abortion Federation 1996 national symposium. Copies of the report are $8; contact NAF at 1755 Massachusetts Avenue, NW, Suite 600, Washington, DC 20036, or call 202-667-5881.
Julianna S. Gonen, PhD, Jacobs Institute research associate, was a general session speaker at the Snowmass Institute conference "Succeeding in Women's Health," held in Pittsburgh, PA, May 3-5, 1998. She was also recently named to the Community Advisory Board of the Lesbian Services Program of Washington, DC's Whitman-Walker Clinic.
We are currently accepting applications for the 1999 Jacobs Institute-Ortho-McNeil Pharmaceutical Scholar award. Research that considers the changing health care environment, the unmet need for primary and preventive health services, the historic lack of research on women's health, and the importance of social, cultural, legal, economic, and behavioral factors influencing the financing and delivery of health care to women is eligible. The award is a one-year, $30,000 grant. The application deadline is October 15, 1998. For more information, please contact the Jacobs Institute at 202-863-4990.
The proportion of postmenopausal African-American women who receive a prescription for estrogen is significantly lower than that of Caucasian women, according to research recently published in Women's Health Issues. This finding comes from two authors who compared the use of estrogen replacement therapy by African-American and Caucasian women; they also found the proportion of women reporting previous use of estrogen was significantly higher among Caucasian women than African-American women.
Barbara A. Bartman, MD, MPH, of the University of Maryland School of Medicine in Baltimore and Ernest Moy, MD, MPH, of the Association of American Medical Colleges co-authored the article. Bartman is the 1996 recipient of the annual Jacobs Institute of Women's Health-Ortho-McNeil Pharmaceutical Scholar Award. She recieved the $30,000 award to explore racial differences in the use of estrogen therapy among middle-aged and older women. The results of that study were published in the January/February 1998 issue of Women's Health Issues, a publication of the Jacobs Institute of Women's Health.
Bartman and Moy studied estrogen use, duration of use, and the frequency with which physicians prescribe estrogen replacement therapy for African-American and Caucasian women. They found the proportion of African-American women reporting receipt of an estrogen prescription in a single year was significantly lower than the proportion of Caucasian women receiving estrogen. Duration of estrogen use was found to be similar among Caucasian and African- American women. Rates of office-based prescribing of estrogen have increased for both white and nonwhite women. However, rates of prescribing estrogen for nonwhite women did not appear to have increased at rates comparable to those for white women.
Estrogen replacement in postmenopausal women is believed to reduce morbidity and mortality from a variety of conditions. In one of the few other studies to examine race and estrogen use, black women were half as likely as white women to take hormone replacement therapy. The authors note that black women are at higher risk of developing coronary artery disease and have a higher risk of
death from cardiovascular disease than white women of comparable age. "There may be opportunities to improve access to preventive health care services, particularly for minority women from lower income groups," the investigators concluded.
Finding ways to improve the delivery of health care services to women is the focus of the annual Jacobs Institute-Ortho-McNeil Pharmaceutical Scholar award. The application deadline for the 1999 award is October 15, 1998 (see page 2 for details). Copies of the January/February 1998 Women's Health Issues are available from the Jacobs Institute for $21.50 each, plus $3.50 shipping and handling. For more information, please contact the Jacobs Institute at 202-863-4990.
Welcome to the following new members of the Jacobs Institute, who joined in March and April, 1998. To become a member, complete the order form below. For more information on membership, call the Jacobs Institute at 202-863-4990.
New members from March 1 to April 30, 1998:
Eva Anderson, MPH
Friends of Warren