Conducting research to improve the access to care and quality of care provided to women with AIDS/HIVrelated illnesses. Women will be included in a major AHCPR survey examining health care services utilization, financing, barriers to care, functional status, and quality of care. Supporting the development and dissemination of Funding research intended to improve access to health services among minority and low-income women and women with disabilities. Currently, AHCPR is developing plans for the third National Medical Expenditures Survey (NMES) that will provide extensive data on the health care needs of these women. In addition, AHCPR will fund investigator-initiated and targeted extramural research in this area. AIDS TREATMENT Given Question. The cost per case for treating AIDS victims appears to vary enormously from one locality to another. that this epidemic is spreading rapidly among certain populations, and we can expect treatment costs to rise accordingly, I'd like to know about AHCPR's work in this area. - What can you tell us about preventive measures and effective, lower-cost treatments for AIDS are there methods being used in San Francisco, for example, that the people in Jersey City ought to know about? Answer. Across most studies, the lifetime cost of treating AIDS among adults ranges from $40,000 to $90,000. Various factors account for these differences, ranging from regional variations in expertise and availability of formal and informal community-based options, to population differences in severity of illness and barriers to care, the use of costly pharmaceuticals to treat existing complications of HIV, and the availability of primary and secondary prophylactic treatment against opportunistic infections that ward off expensive hospitalizations. Earlier research frequently found lower medical care costs on the West Coast, due largely to expertise in managing the illness and the availability of more efficient outpatient community-based options for care. However, current findings are pointing to a narrowing of these differences perhaps due to the widespread use of expensive pharmaceutical interventions by homosexual/bisexual men on the West Coast, which may not be as readily available to other risk groups largely concentrated on the East Coast. As part of its AIDS Medical Care Effectiveness Program, the AHCPR is conducting the AIDS Cost and Service Utilization Survey (ACSUS). This survey will collect longitudinal, prospective patient interview data, as well as medical and billing record data, from 2,000 HIV patients recruited across more than 20 provider sites in 10 urban regions for a period of 18 months. separate sample of 400 children also will be followed. A The survey is being fielded at the end of March 1991 and preliminary results addressing some of the medical care resource utilization issues noted above will be available by the beginning of 1992. In addition, several other investigator-initiated largescale studies of resource utilization are underway which will provide detailed information on factors influencing population differences in the cost of medical care for HIV. Question. Tell us about your agency's development of clinical practice guidelines for AIDS treatment, and how the information will be disseminated to providers. Answer. The Agency for Health Care Policy and Research (AHCPR) has initiated a project to develop clinical practice guidelines for HIV/AIDS. These guidelines will be developed by a panel of clinical experts and health care consumers for use by physicians, educators, and other health care practitioners to assist in determining how HIV-related diseases, disorders, and other health conditions can most effectively and appropriately be diagnosed, treated, and managed clinically. A panel chair and cochair have been appointed and will meet at the end of March to select the remaining members of the panel from all nominations received. Also, at least two subpanels will be constituted; one which will focus on pediatric HIV and one on women with HIV. first meeting of the main panel will take place in June 1991. The As the initial set of clinical practice guidelines are completed, AHCPR will promote and support their dissemination to practitioners and other users, beginning in the Fall 1992. Organizations of health care practitioners, health care consumers, peer review organizations, accrediting bodies, academic medical centers, medical educators, researchers, payers, and other appropriate groups will be encouraged and energized to disseminate the guidelines to their members and constituents. These promotional efforts will be facilitated by presenting the guidelines in print, through other media, and in formats that readily can be understood and implemented by various users. Guidelines will be made available through medical libraries and indexing services including the National Library of Medicine and its outreach systems. It is anticipated that continual updating of the guidelines will take place. Also, AHCPR will evaluate the success of its dissemination efforts, including the effects on clinical practice and patient outcomes. BREAST CANCER Question. I understand that AHCPR may be doing work in the future on breast cancer. This is an area of particular interest to me, as the sponsor of legislation expanding Medicare coverage of breast cancer screening. Just two weeks ago, I introduced a bill to expand that coverage to women ages 50 64. What would a MEDTEP study of breast cancer actually study: would the research investigate only treatments, or is it appropriate also to study prevention and how to increase efforts at early detection? Answer. Breast cancer is among the conditions identified by the Institute of Medicine and the Agency for Health Care Policy and Research (AHCPR) as a priority for study under MEDTEP. However, from our discussions with the National Cancer Institute (NCI), we believe that NCI is in a better position to explore better techniques for treating breast cancer. We do expect to contribute to this important issue by facilitating the development of guidelines to ensure the quality of mammograms. This work would be undertaken with the full collaboration of the Food and Drug Administration, the National Cancer Institute, and the Centers for Disease Control. Question. Breast cancer is a perfect example of a condition whose treatment is enhanced enormously through early detection. Does it make sense to you that AHCPR might meet its mandate to disseminate information about effective treatments by undertaking to educate women about the new Medicare coverage of mammography? This Answer. Generally, AHCPR is focusing its attention on the dissemination of the guidelines, publications, and clinical effectiveness information generated under its own auspices. does not preclude participation in the dissemination of pertinent information from other sources in the future. The Health Care Financing Administration disseminates Medicare coverage information to beneficiaries through the Medicare Handbook Information about its mammogram coverage policy will be published in the 1991 revision of the Medicare Handbook. Further, our guideline activity regarding quality determinants for mammograms will have the additional advantage of focusing attention on this clinical issue. MEDTEP RESEARCH Question. The FY 90 Labor HHS report directed that a conference be held to develop a research agenda for MEDTEP. What is the status of that conference and the agenda? Answer. The National Agenda Setting Conference on Outcomes and Effectiveness Research will be held April 14 - 16, 1991 in the Washington, D.C. metropolitan area. There will be ten workshops within the conference addressing a wide range of outcomes and effectiveness research issues. Question. What has the agency learned so far from the medical treatment effectiveness research portfolio, and how will this knowledge be used to improve health care? Answer. MEDTEP research is designed to produce several different products, which will have either direct or indirect effects on health care. These include specific findings relating treatment to outcomes or describing variations in treatment, syntheses of literature, identification of unresolved issues warranting study, new measures and methods for conducting outcomes research, new protocols or materials for involving patients in health care decisionmaking, methods for disseminating findings and other products, and, ultimately, clinical guidelines. MEDTEP research will improve health care by producing and disseminating information to replace untested assumptions and unsettled questions regarding what treatment is effective and appropriate. Information needed by health care providers, patients, policymakers, and health services researchers will take the form of professional publications, presentations, and educational materials; patient-oriented tools such as interactive videodiscs for "shared decisionmaking;" policy-relevant data and projections on costs, utilization, and effectiveness; and improved research tools and databases. Some of these products will require significant time to create; however, interim products of many MEDTEP grants are noteworthy. Specific examples of contributions already resulting from the Patient Outcomes Research Teams (PORTS) follow: After extensive review of the literature, the Cataract PORT reports finding no studies to support the hypothesis that visual acuity, significant astigmatism, visual function, or health status are different for patients undergoing phacoemulsification versus standard extracapsular cataract extraction. The PORT on Benign Prostatic Hypertrophy (Wennberg, The PORT on low back pain (Deyo, University of Washington) The PORT on acute myocardial infarction (McNeil, Harvard Question. What MEDTEP studies will be undertaken in 1991, and what studies are planned for FY92? Answer. New MEDTEP studies approved for funding since the start of FY 1991 include the following: Outcomes Following Community Interventions for Acute Nursing Effectiveness in Preventive Child Health Program Head Injury Outcomes Effectiveness and Outcomes of Non-Cardiac Surgery Implementing Practice Guidelines Refining the Measurement of Quality of Care Clinical Decisionmaking in Medical Adverse Events A Physician Insurer's Impact on Early Cancer Detection Additional grants for FY 1991 will be made in the summer, subsequent to review of the National Advisory Council for Health Care Policy, Research and Evaluation. Expected new grants include studies on back pain in ambulatory settings, epilepsy, prostate cancer, and hysterectomy. In addition, AHCPR anticipates supporting during FY 1991, PORTS dealing with chronic obstructive pulmonary disease, congestive heart failure, and prevention of stroke. New starts in FY 1992 are mainly dependent on investigatorinitiated grants. These will be supplemented in FY 1992 with the initiation of a new program of research centers to concentrate on minority health issues. We will explore the potential of conducting studies of the effectiveness of pharmacologic interventions. The AHCPR has issued a request for applications (RFA) on issues dealing with the ways in which scientific information can be presented and disseminated to foster its assimilation and use by health care providers and patients. The first deadline date for receipt of applications is April 26, 1991. Awards will be made late in FY 1991 and early FY 1992. UNINSURED Question. Depending on who's talking, there are either 31 million or 37 million uninsured Americans, or some number in between. Can you give us a picture of the uninsured: who are they, are there geographic or socioeconomic factors affecting them, and what do we know about the health status of uninsured Americans? Answer. The following are recent findings on the uninsured from the AHCPR 1987 National Medical Expenditure Survey (NMES): Size, Growth, and Health Services of the Uninsured Population Nearly 25 million people were uninsured throughout 1987. Another 23 million were uninsured for part but not all of the year, making a total of 48 million (1 out of 5 |