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Answer. Research focusing on the health problems that disproportionately affect minority populations has long been a priority for NCNR. In FY 1990, 8.4 percent of the total NCNR budget was directed toward minority health issues. In addition, the NCNR has initiated several strategies to attract qualified minority candidates to participate in NCNR-supported research training. These strategies include minority supplements offered for institutional training awards, minority faculty and student supplements to research awards, workshops at historically Black colleges and universities and minority schools of nursing, and regular meetings of the Ad Hoc Committee on Minority Training for Nursing Research.
Question. Dr. Hinshaw, we understand that the NCNR has a sizeable portfolio in studies about women's health. Describe the thrust of the current studies and directions needed for future women's health research.
Answer. The NCNR supports many studies in the area of women's health including investigations of predictors of pregnancy complications for women of lower socioeconomic status, factors that influence women's decisions about estrogen replacement therapy, recovery in older women after hip fracture and heart attacks, and factors that enhance breast self-examination practices and use of mammography.
Longitudinal studies are needed to examine the natural history of health and diseases across the life span. Patterns of perimenstrual symptoms and the health effects of changing hormone patterns during perimenopause need further study. Psychobiological correlates of symptoms in relation to hormone changes and risk factors for disorders prevalent in midlife and older women, such as breast cancer, as well as diseases or conditions more prevalent in women, such as osteoporosis, need to be targeted.
AVERAGE COST OF GRANTS
Question. Dr. Hinshaw, what kinds of strategies are you using to stabilized the average costs of grants awarded by your Center?
Answer. In an effort to hold down the average costs of awarded grants, NCNR Program Officials and Grants Management staff are conducting prudent, pre-award negotiations of both competing and noncompeting research project grant awards in compliance with the NIH Cost Management Plan. Beginning in FY 1991, NCNR instituted cost-containment policies that eliminate the arbitrary downward reductions which were instituted in past years. Each competing grant is carefully examined to determine what level of budgetary adjustments can be implemented without adversely affecting the science of the proposed project. Future year estimates on both competing and noncompeting awards reflect an approximate four percent increase from the first year adjusted cost, taking into consideration any Initial Review Group (IRG) recommendations concerning scientific needs for the future of the project.
While one of the long-term goals of the NIH Cost Management Plan is to heighten the sensitivity of IRG members to cost issues, it is likely that change in study section behavior will not occur immediately. NCNR has instructed the National Advisory Council for Nursing Research to pay special attention to proposed budgets in light of the cost-containment issue, and the Research Subcommittee of the Council will examine carefully any proposed project with a direct cost exceeding $350,000.
Although the amounts requested in a research project grant budget are determined by the investigator, based on the requirements of the science, it is hoped that clear communications and honest negotiation with the investigators will result in low overall average cost increases for research project grant awards. It should be emphasized that each grant proposal is considered individually by NCNR staff, and that budgetary adjustments are made on a case-by-case basis.
Question. Dr. Hinshaw, what progress has been made toward the addition of an exploratory center for health and behavior research? What has been the response from the research community?
Answer. The NCNR has published a request for applications, in conjunction with the National Institute of Child Health and Human Development and the National Institute of Mental Health, announcing the availability of funds to establish exploratory centers for health and behavior research with a focus on children and adolescents. The date for receipt of applications is May 1991. Thus far, the response has been outstanding, as NCNR program staff have received numerous telephone inquiries concerning this announcement.
Question. Now that your Intramural Research Program has been established, can you describe the areas of research to be pursued ɔver the next few years? What priority will be placed on this program, and do you have sufficient resources to fund this program as you envision?
Answer. At the present time, the bulk of NCNR Intramural Program efforts are concentrated on HIV infection/AIDS. Ongoing research regarding HIV infection is focused on three prime areas: (1) symptom management, which includes disease symptoms and treatment side effects; (2) compliance with therapeutic regimens; and (3) health-related quality of life. One large study underway in the symptom management area investigates the occurrence of nutrition-related problems during treatment for HIV infection, and the relationship of nutritional status to immune function. The findings from this study will help in the development of interventions, as well as predicting who is at greatest risk of nutrition-related problems so that those interventions can be best directed. Another protocol scheduled to begin within the next month is designed to study muscle weakness that occurs during treatment of HIV infection with AZT and other antiretrovirals. Additional symptom management studies to be developed in the
future include those aimed at common and debilitating problems such as diarrhea, night sweats, and pain.. In addition to expansion into new areas of investigation, intramural studies will be conducted at additional sites in order to reach subject populations, conditions, or a spectrum of disease not currently available at the NIH clinical Center. The second area of focus, compliance with therapeutic regimens, will include administration issues, such as administration techniques and patient education. The third area, health-related quality of life, is currently under development and will include improvement of the techniques for measuring health-related quality of life as an outcome in clinical studies.
The NCNR anticipates future expansion of its Intramural Program to include Non-AIDS populations. Non-AIDS research relative to quality of life that constitutes a primary outcome measure is already underway. This NCNR study is a sub-study to the Honolulu Aging Asian study in Honolulu. The study examines the quality of life and burden of care in caregivers of aging demented male participants of the Honolulu Heart Study. Additional expansion is anticipated of the three major research programs, symptom management, compliance with therapeutic regimens, and health related quality of life to a focus on cancer populations.
NCNR is committed to providing adequate support for these intramural research areas. The growth of the science relative to other NCNR program priorities will dictate the resources to be allocated to Intramural Research.
Question. What is the NCNR doing to address the AIDS epidemic and to improve the quality of life of people infected? What research is needed to guide the practice of nurses caring for patients with HIV infection and their families?
Answer. The 1992 budget request for NCNR includes over $3.0 million for AIDS and AIDS related research, which will be used to support extramural research project grants, research training grants, and intramural research efforts. The NCNR's Intramural Research Program has been conducting studies of the type, severity, and causes of nutrition-related problems in patients with HIV infection, such as unintentional weight loss, decreased appetite, and malnutrition. This effort will be expanded to focus on other symptoms such as fatigue, pain, cognitive dysfunction, diarrhea, oral conditions, and muscle weakness.
NCNR plans to replicate the symptom management studies to settings beyond NIH to include women and minorities. Both the Intramural program and the Extramural program will build on existing quality of life measures, such as functional and emotional status, in order to develop nursing interventions that will assist individuals with HIV infection to live productive lives.
Other areas of research needed include the underlying causes of behaviors and the effectiveness of interventions to modify
high-risk behaviors related to the transmission of HIV and prevention strategies for women and minority populations.
Question. Dr. Hinshaw, you are showing a decrease in the number of research trainees for the first time after several years of growth. The nursing community has expressed the need for continued growth in research training for nurses. Is this area no longer a priority for NCNR?
Answer. Research training remains a high priority for the NCNR. There is a strategic plan for systematically increasing the number of supported trainees and fellows to 320 per year. This number is based on the recommendation of the Institute of Medicine 1985 report on Personnel Needs and Training for Biomedical and Behavioral Research. By FY 1990, the number of supported trainees/fellows had increased from 165 in FY 1986 to 257. However, in 1992, in order to increase funds for research project grants, it is not possible to continue to raise the number of individuals supported for research training.
NURSING RESEARCH ON OLDER PERSONS
Question. Are there specific research studies NCNR is supporting that will lead to improved nursing care for your Nation's older people?
Answer. As the proportion of older persons continues to increase, NCNR has recognized the need for understanding their changing health problems and for well designed and effective nursing intervention strategies to assist with these health problems. NCNR research on older persons addresses their health behaviors in order to increase their ability to stay well, to decrease the impact of chronic illness, to avoid disabilities from declining functional status, and to assist in maintaining their quality of life. The NCNR also funds research on caregiving issues concerning older people who are experiencing health problems such as Alzheimer's disease, cancer, and cardiac disease.
Examples of research studies include nursing interventions to deal with the problem of urinary incontinence, to increase proper medication adherence in older persons with rheumatoid arthritis, to evaluate methods that enhance recovery from a myocardial infarction in older women, to improve breast cancer screening, and to improve respiratory status for persons with chronic obstructive lung disease. Other studies are examining the convalescence and return of functional ability of older women with hip fractures and the role exercise training can play in recovery following stroke.
NCNR has targeted long-term care research as a priority area. During FY 1991, NCNR will initiate a research program focused on community-based long-term care of older persons. As most older persons live in the community and do not need long-term care in a nursing home, this research program will encourage investigators to develop intervention strategies to assist in maintaining sound health status, to increase well being, and to enable older individuals to remain at home rather than being institutionalized when they become ill or impaired.
QUESTIONS SUBMITTTED BY SENATOR DANIEL K. INOUYE
Question. As you know, Congress has great interest in research related to Alzheimer's Disease and that the NCNR has been an active partner is addressing this important issue. Do you have any new initiatives to contribute to our knowledge of caring for individuals with this devastating illness?
Answer. Alzheimer's Disease and the related dementias (AD) are certainly a significant and growing health problem. The impact of AD on the over 4 million Americans afflicted with the disease and their families is severe. Although it is not yet possible to prevent, treat, or permanently alter the course of the underlying disease, interventions are being developed and tested which can help to manage the symptoms and preserve function.
In addition to research on the caregiving aspects of Alzheimer's disease, the NCNR portfolio includes studies related to the clinical management of patient and family responses to symptoms experienced by patients. Interventions are being tested to deal with symptoms such as cognitive deficits, aggressive behaviors during activities of daily living, and spatial memory disturbances and disorientation which often result in wandering behaviors.
In order to stimulate research in this area, an RFA entitled, "Management of Alzheimer's Disease Symptoms," has been issued in collaboration with the National Institute on Aging for preliminary investigations dealing with the broad range of secondary symptoms exhibited by Alzheimer's patients. The symptoms may include, but are not limited to wandering, disturbed sleep, pacing, agitation, feeding and dressing difficulties, incontinence, and toileting difficulties, screaming and other vocalizations, aggression, and violence. These symptoms not only contribute to decisions to institutionalize affected individuals, but also lead to the use of chemical and physical restraints.
Data from these studies will provide valuable information on the acceptability, safety, and rationale for the effectiveness of the interventions needed prior to undertaking any large scale clinical trials.
Question. Dr. Hinshaw, as you know, Congress is interested in each of the NIH Institutes working collaboratively with the NCNR. What are some examples of interdisciplinary initiatives/activities that are ongoing/underway? (Alzheimer'sNIA; Frailty-NIA; Adherence - NHLBI; Diabetes-NIDDK; LBW-NICHD; P20NICHD/NIMH)
Answer. NCNR continues to work collaboratively with several NIH Institutes. The initiatives regarding care and prevention of low birthweight infants have been cosponsored by the National Institute of Child Health and Human Development. NCNR continues to work with the National Institute on Aging in support of