National probability samples in studies of low-prevalence diseases. Part I: Perspectives and lessons from the HIV cost and services utilization study.
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OBJECTIVE: To examine the trade-offs inherent in selecting a sample design for a national study of care for an uncommon disease, and the adaptations, opportunities and costs associated with the choice of national probability sampling in a study of HIV/AIDS. SETTING: A consortium of public and private funders, research organizations, community advocates, and local providers assembled to design and execute the study. DESIGN: Data collected by providers or collected for administrative purposes are limited by selectivity and concerns about validity. In studies based on convenience sampling, generalizability is uncertain. Multistage probability sampling through households may not produce sufficient cases of diseases that are not highly prevalent. In such cases, an attractive alternative design is multistage probability sampling through sites of care, in which all persons in the reference population have some chance of random selection through their medical providers, and in which included subjects are selected with known probability. DATA COLLECTION AND PRINCIPAL FINDINGS: Multistage national probability sampling through providers supplies uniquely valuable information, but will not represent populations not receiving medical care and may not provide sufficient cases in subpopulations of interest. Factors contributing to the substantial cost of such a design include the need to develop a sampling frame, the problems associated with recruitment of providers and subjects through medical providers, the need for buy-in from persons affected by the disease and their medical practitioners, as well as the need for a high participation rate. Broad representation from the national community of scholars with relevant expertise is desirable. Special problems are associated with organization of the research effort, with instrument development, and with data analysis and dissemination in such a consortium. CONCLUSIONS: Multistage probability sampling through providers can provide unbiased, nationally representative data on persons receiving regular medical care for uncommon diseases and can improve our ability to accurately study care and its outcomes for diseases such as HIV/AIDS. However, substantial costs and special circumstances are associated with the implementation of such efforts. (+info)
Qualitative research and the profound grasp of the obvious.
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OBJECTIVE: To discuss the value of promoting coexistent and complementary relationships between qualitative and quantitative research methods as illustrated by presentations made by four respected health services researchers who described their experiences in multi-method projects. DATA SOURCES: Presentations and publications related to the four research projects, which described key substantive and methodological areas that had been addressed with qualitative techniques. PRINCIPAL FINDINGS: Sponsor interest in timely, insightful, and reality-anchored evidence has provided a strong base of support for the incorporation of qualitative methods into major contemporary policy research studies. In addition, many issues may be suitable for study only with qualitative methods because of their complexity, their emergent nature, or because of the need to revisit and reexamine previously untested assumptions. CONCLUSION: Experiences from the four projects, as well as from other recent health services studies with major qualitative components, support the assertion that the interests of sponsors in the policy realm and pressure from them suppress some of the traditional tensions and antagonisms between qualitative and quantitative methods. (+info)
ESHRE Preimplantation Genetic Diagnosis (PGD) Consortium: preliminary assessment of data from January 1997 to September 1998. ESHRE PGD Consortium Steering Committee.
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The first clinical application of preimplantation genetic diagnosis (PGD) was reported almost a decade ago. Since then, the range of genetic defects that can be detected at single cell level has increased dramatically. At the 13th Annual Meeting of ESHRE in Edinburgh in 1997, a PGD Consortium was formed to undertake the first systematic and long-term study of the efficacy and clinical outcome of PGD. We report here the first data collection covering the period of January 1997 to September 1998. Referral data on 323 couples have been collected for a variety of monogenic and chromosomal disorders, providing information about which patients, at risk for which genetic diseases, are interested in PGD. Data were collected on 392 PGD cycles, resulting in 302 embryo transfers and 66 clinical pregnancies. Because of the importance of follow-up of the children born after PGD, participating centres were asked to contribute data on the pregnancies achieved and the children born after PGD since the start of their PGD programme. Data on 82 pregnancies and 110 fetal sacs were collected, and information was available on 79 children. Finally, biopsy, fluorescence in-situ hybridization and polymerase chain reaction protocols were collected, clearly showing that no consensus exists on technical aspects such as which culture medium to use, and emphasizing the role the PGD Consortium could play in setting up guidelines for good laboratory practice. In conclusion, it is clear that the effort of gathering data on PGD cycles is worthwhile and will be continued in the future, preferably using electronic data collection. (+info)
The pursuit of quality by business coalitions: a national survey.
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The extent to which business coalitions and their employer members are catalysts for improving quality of care is of interest to policymakers, who need to know where and under what circumstances the marketplace succeeds on its own in assuring quality. Using data from the 1998 National Business Coalition on Health annual survey, this paper indicates that most coalitions have an infrastructure in place that could be tapped to advance quality goals. Although the survey data cannot tell us the extent to which coalitions are exercising their enhanced market influence specifically to improve quality, interviews with coalition leaders provide insights about how quality considerations can factor into coalition strategies. (+info)
Prescription drugs and managed care: can 'free-market detente' hold?
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The rapid rise in pharmaceutical benefits costs, often cited as a major contributor to the resurgence in health care cost growth, is beginning to strain the relationship between the pharmaceutical and the managed care industries in the United States. In interviews conducted in 1999, executives from both industries maintained a continued preference for a market-based resolution of these tensions. There is evidence, however, that this private-sector detente may give way in the face of the rising business and political pressures that both industries face. Active leadership will be required to prevent deterioration of the prevailing political climate toward economic controls. (+info)
Quality of information on hospice referral.
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Good quality referral information provides hospice staff with essential information at a time when patients are particularly vulnerable. An Ideal Referral Criteria tool for measuring the quality of general practitioners' information was piloted at one hospice site. Overall inter-rater reliability was 90%, with individual categories ranging from 19% to 34%. Cronbach's alpha was 0.35. Further psychometric testing is recommended. (+info)
Health plan competition in local markets.
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OBJECTIVE: To examine the structure of local health insurance markets and the strategies health plans were using to respond to competitive pressures in local markets in 1996/1997. DATA SOURCES/STUDY SETTING: Community Tracking Study site visits conducted between May 1996 and April 1997 in 12 U.S. markets selected to be nationally representative. STUDY DESIGN: In each site, 36 to 60 interviews on local health system change were conducted with healthcare industry informants representing health plans, providers, and purchasers. DATA COLLECTION/EXTRACTION METHOD: Relevant data for this article were abstracted from standardized protocols administered to multiple respondents in each site. PRINCIPAL FINDINGS: Although the competitive threat from national plans was pervasive, local plans in most sites continued to retain strong, often dominant, positions in historically concentrated markets. In all sites, in response to purchaser pressures for stable premiums and provider choice, and the threat of entry and to plans were using three strategies to increase market share and market power: (1) consolidation/geographic expansion, (2) price competition, and (3) product line/segment diversification that focused on broad networks and open-access products. In most markets, in response to the demand for provider choice, the trend was away from ownership and exclusive arrangements with providers. CONCLUSIONS: Although local plans were moving to become full-service regional players, there was uncertainty about the abilities of all plans to sustain growth strategies at the expense of margins and organizational stability, and to effectively manage care with broad networks. (+info)
Antagonism and accommodation: interpreting the relationship between public health and medicine in the United States during the 20th century.
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Throughout the course of the 20th century, many observers have noted important tensions and antipathies between public health and medicine. At the same time, reformers have often called for better engagement and collaboration between the 2 fields. This article examines the history of the relationship between medicine and public health to examine how they developed as separate and often conflicting professions. The historical character of this relationship can be understood only in the context of institutional developments in professional education, the rise of the biomedical model of disease, and the epidemiologic transition from infectious disease to the predominance of systemic chronic diseases. Many problems in the contemporary burden of disease pose opportunities for effective collaborations between population-based and clinical interventions. A stronger alliance between public health and medicine through accommodation to a reductionist biomedicine, however, threatens to subvert public health's historical commitment to understanding and addressing the social roots of disease. (+info)