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Objective: Assess impact of a computer-based patient support system on quality of life in younger women with breast cancer, with particular emphasis on assisting the underserved.Design: Randomized controlled trial conducted between 1995 and 1998.Setting: Five sites: two teaching hospitals (Madison, Wis, and Chicago, Ill), two nonteaching hospitals (Chicago), and a cancer resource center (Indianapolis, Ill). The latter three sites treat many underserved patients.Participants: Newly diagnosed breast cancer patients (N = 246) under age 60.Interventions: Experimental group received Comprehensive Health Enhancement Support System (CHESS), a home-based computer system providing information, decision-making, and emotional support.Measurements and Main Results: Pretest and two post-test surveys (at two- and five-month follow-up) measured aspects of participation in care, social/information support, and quality of life. At two-month follow-up, the CHESS group was significantly more competent at seeking information, more comfortable participating in care, and had greater confidence in doctor(s). At five-month follow-up, the CHESS group had significantly better social support and also greater information competence. In addition, experimental assignment interacted with several indicators of medical underservice (race, education, and lack of insurance), such that CHESS benefits were greater for the disadvantaged than the advantaged group.Conclusions: Computer-based patient support systems such as CHESS may benefit patients by providing information and social support, and increasing their participation in health care. These benefits may be largest for currently underserved populations. [ABSTRACT FROM AUTHOR]

Using an existential-phenomenological approach, this paper describes how women with breast cancer experience the giving and receiving of social support in a computer-mediated context. Women viewed their experiences with the computer-mediated support group as an additional and unique source of support in facing their illness. Anonymity within the support group fostered equalized participation and allowed women to communicate in ways that would have been more difficult in a face-to-face context. The asynchronous communication was a frustration to some participants, but some indicated that the format allowed for more thoughtful interaction. Motivations for seeking social support appeared to be a dynamic process, with a consistent progression from a position of receiving support to that of giving support. The primary benefits women received from participation in the group were communicating with other people who shared similar problems and helping others, which allowed them to change their focus from a preoccupation with their own sickness to thinking of others. Consistent with past research is the finding that women in this study expressed that social support is a multidimensional phenomenon and that their computer-mediated support group provided abundant emotional support, encouragement, and informational support. Excerpts from the phenomenological interviews are used to review and highlight key theoretical concepts from the research literatures on computer-mediated communication, social support, and the psychosocial needs of women with breast cancer. [ABSTRACT FROM AUTHOR]

Information and communication technologies may help reduce health disparities through their potential for promoting health, preventing disease, and supporting clinical care for all. Unfortunately, those who have preventable health problems and lack health insurance coverage are the least likely to have access to such technologies. Barriers to access include cost, geographic location, illiteracy, disability, and factors related to the capacity of people to use these technologies appropriately and effectively. A goal of universal access to health information and support is proposed to augment existing initiatives to improve the health of individuals and the public. Both public- and private-sector stakeholders, particularly government agencies and private corporations, will need to collaboratively reduce the gap between the health information "haves" and "have-nots." This will include supporting health information technology access in homes and public places, developing applications for the growing diversity of users, funding research on access-related issues, ensuring the quality of health information and support, enhancing literacy in health and technology, training health information intermediaries, and integrating the concept of universal access to health information and support into health planning processes. [ABSTRACT FROM AUTHOR]

We present a method of constructing quantitative indices, which is based on the subjective opinions of a panel of experts, and discuss how a Bayesian probability model and panel opinions can be used together to produce an index. Among the advantages of the method are its face validity and ease of construction. Research shows that when expert opinions are solicited according to certain guidelines, subjective methods may be as accurate as the more objective ones. Guidelines along with a brief report of a recent application are also discussed. [ABSTRACT FROM AUTHOR]

Expert opinions supplement empirical data in many epidemiologic assessments. For veterinary disease freedom surveillance, where the geographic scope of concern is often broad, populations subject to change, decisions eminent and empirical data, expert opinion can be a critical component of the decision making process. However, opinion is by definition subjective and the manner in which opinion is sought can impact the quality and reliability of estimates. Group interaction can hinder or improve the estimation process, depending on its facilitation. Further, whether and how validation is conducted can limit or increase acceptance of the resulting model. While the utility of expert opinion is widely recognized in many fields, and the impact of its use or misuse implicit, standards for application to veterinary assessments are not readily available. This paper aims to foster discussion on this influential component of epidemiology, with disease freedom application as a focus. Benefits and concerns attributed to expert judgment and guidelines for its structured elicitation are described, borrowing insights from its long history of use in decision science fields and examples from recent veterinary assessments., (Published by Elsevier B.V.)

Background: The value of patient satisfaction surveys in health care improvement remains controversial. This study examined the value of alternative ways of identifying patient needs and estimating importance of those needs in improving the impact of satisfaction surveys., Methods: Ninety-one acute myocardial infarction (AMI) patients from three southeast U.S. community hospitals were surveyed in 1992. Critical incident and person-focused interviews were used to identify patient needs. Besides overall/global satisfaction with care, patients rated satisfaction with and importance of 12 care delivery and 18 information and support needs. Unmet need scores (importance minus satisfaction) were estimated. Derived importance scores were assessed by correlating global satisfaction with individual need satisfaction scores. A two-step process for identifying priority areas for improvement was proposed., Results: Patients identified and assigned greater scores to unmet needs for information and support needs (not included in typical satisfaction surveys) compared to typically assessed care delivery needs (p < 0.0001). Direct importance ratings differed substantially from those derived through correlation analyses (r = 0.28, p > 0.3 for care delivery needs and r = -0.17, p > 0.4 for information and support needs). Needs that received high importance and low satisfaction scores were all information and support needs., Discussion: Needs that patients consider very important are usually ignored in typical patient surveys. Derived approaches typically used to assess importance of need from satisfaction data may provide misleading results. If satisfaction surveys are to result in real performance improvement, a fresh examination of the content and importance assessment strategies, as proposed, is needed.

This paper reviews the research and development around a consumer health informatics system CHESS (The Comprehensive Health Enhancement Support System) developed and tested by the Center for Health Systems Research and Analysis at the University of Wisconsin. The review will place particular emphasis on what has been found with regard to the acceptance and use of such systems by high risk and underserved groups.

This study examined how HIV-infected individuals used an interactive health software package called CHESS (Comprehensive Health Enhancement Support System). CHESS packages information and support in a variety of ways; the research examined how a subset of users whose posttest scores in a larger randomized trial showed significant improvement in quality of life compared on use patterns of CHESS with those who did not improve. The evidence presented here points to the nature of CHESS use more than it does to the amount of CHESS use. Those whose quality of life improved were among the most involved in their use of CHESS information tools. That is, even though Discussion Group accounted for the majority of all CHESS uses and time spent with the system, total use and Discussion Group use appeared less important than use of the information tools, especially if that use was at least somewhat sustained and involved.

Long-term care acute care providers are using innovative, data-based approaches and information systems solutions to position themselves for the future. These approaches will significantly improve the ability of these providers to treat patients, justify their continued existence, and compete in the marketplace.

The Comprehensive Health Enhancement Support System (CHESS) is an interactive computer system containing information, social support, and problem-solving tools. It was developed with intensive input from potential users through needs-assessment surveys and field testing. CHESS had previously been used by women in the middle and upper socioeconomic classes with high school and college education. This article reports on the results of a pilot study involving eight African-American women with breast cancer from impoverished neighborhoods in Chicago. CHESS was very well received; was extensively used; and produced feelings of acceptance, motivation, understanding, and relief.

We asked health care professionals to identify and prioritize barriers to implementing TQM in their organizations. Lack of evidence of TQM success was a commonly listed barrier. In response, we drew from research in the innovation literature that identifies factors that distinguish successful from failed efforts to innovate and improve. Applied to TQM principles, innovation findings overwhelmingly support customer and quality mindedness. To a lesser degree other principles are upheld, suggesting future research in the area.

Systems thinking is a fundamental element of quality management and should be a fundamental element of health care reform. An implication of systems thinking is that one aim of health care should be to minimize the total costs of illness, not simply the direct medical expenditures. If we are to continue to improve health care over time, we should measure its impact on the total costs of illness to the patient, family, employer, and society. Thus a system of measurement is needed that quantifies total costs of illness and also suggests how these constituencies can collaborate to improve processes and reduce total costs. This article introduces the total costs of illness concept, contrasts it with societal costs of illness, describes a measurement system we developed to quantify it, and describes a case study examining the total costs of back injury illness to employers. We found that medical expenditures accounted for less than half of the total costs of illness, the average total costs of illness varied by over 350 percent among employers, and a simple metric (days off work) explained 62.5 percent of the variance in total costs of illness.

This article describes the process of using needs assessment data to develop an interactive information technology specifically designed to support patients in a health-related crisis. The Comprehensive Health Enhancement Support System (CHESS) is an interactive information, social support, and problem-solving system that was developed by a team at the University of Wisconsin. This article looks at the program developed for breast cancer patients and their families.

This paper reports on the development and testing of a risk assessment index for problem marijuana use designed to guide teenagers through an extensive computer-based support system intended to help them improve marijuana-related behaviors. Bayesian decision theory, used as the basis of the index development process, offers the advantage of building the index on subjective judgments of experts and does not require a large empirical data base. The index was found to predict an independent panel's ratings of teenager risk, and predict the marijuana use of 10th graders using self-reports of their profiles in the 7th grade. Implications for future risk assessment developments are discussed.

CHESS (the Comprehensive Health Enhancement Support System) is an interactive, computer-based system to support people facing AIDS/HIV Infection and other health-related crises or concerns. CHESS provides information, referral to service providers, support in making tough decisions and networking to experts and others facing the same concerns. CHESS is designed to improve access to health and human services for people who would otherwise face psychological, social, economic or geographic barriers to receiving services. CHESS has been evaluated in a random-assignment study with over 200 men and women living with AIDS and HIV infection. When CHESS was placed in subjects' homes for 3-6 months, use of CHESS was extremely heavy, with the average subject using CHESS 138 times for 39 hours. Compared with a control group which did not receive CHESS, subjects who used CHESS reported significantly higher quality of life in several dimensions, including social support and cognitive functioning. Users also reported significant reductions in some types of health care costs, especially inpatient services (hospitalizations). All segments of the study population used and benefited from CHESS, including women, minorities and those subjects with lower levels of education. Thus, CHESS appears to be an effective means of delivering education and support to the diverse populations which are affected by AIDS and HIV infection.

The Comprehensive Health Enhancement Support System (CHESS) is an interactive computer system containing information, social support and problem solving tools. It was developed with intensive input from potential users through needs-assessment surveys and field testing. CHESS had previously been used by women in the middle and upper socio-economic classes with high school and college education. This article reports on the results of a pilot study involving eight African-American women with breast cancer from impoverished neighborhoods in the city of Chicago. CHESS was very well received, extensively used and produced feelings of acceptance, motivation, understanding and relief.

Objective: This study was conducted to determine whether an index for measuring quality of care for psychiatric emergencies is reliable and valid., Data Sources/study Setting: The study used primary data collected over a 12-month period from two urban hospitals in the Northeast. One had 700 inpatient beds, an inpatient psychiatric unit, and community mental health personnel located in the emergency department. The other had 300 beds but none of the other hospital's features., Study Design: The index was developed by a panel of experts in emergency psychiatry using a subjective Bayesian statistical methodology and was evaluated in terms of its ability to: (1) predict a second panel's judgments of quality; (2) predict a specific quality-related patient outcome, i.e., compliance with follow-up recommendations; (3) provide a reliable measurement procedure; and (4) detect variations in patterns of emergency department practices., Data Collection/extraction Methods: Data were collected on 2,231 randomly selected emergency psychiatric patients (psychiatric diagnosis, alcohol abuse, nonverbal patients experiencing a psychiatric emergency, and patients with somatic complaints such as life crisis) treated in the emergency departments of the two hospitals., Principal Findings: The index predicted physician judgments of quality, was reliable, exhibited sufficient variation in scores, and was strongly associated with patient compliance., Conclusions: The study demonstrated that a subjective Bayesian model can be used to develop a reliable and valid index for measuring quality of care, with potential for practical application in management of health services.

A study of use of an interactive computer system (CHESS--Comprehensive Health Enhancement Support System) by HIV-Positive people was conducted in Madison and Milwaukee during Fall 1992 and Winter 1993. Computers were placed in homes, and use monitored by the computer. Results showed that the system was used heavily by both samples, and that gender (women used it more) age, (younger used it more), living arrangements (those living alone used it more), and need for health care information (those who felt the most need used it more) but not education predicted use of CHESS. The authors argue that heavy CHESS use by a wide variety of HIV-positive people suggests that the computer can overcome "information poor" barriers in health information campaigns.

This article describes the Quality Assurance Project (1978-1982), which was developed as a demonstration project by a Wisconsin research team and was intended to implement and evaluate new methods for carrying out the regulatory roles of facility and resident assessment in Wisconsin nursing homes. The new method included (1) a screening process to distribute efforts between sanctioning and process improvement, (2) role changes that would move surveyors beyond problem identification toward education and consultation, and (3) a resident review process based on efforts to find systems-level problems. For the first three years of the project (reported here) certain principles were followed, many of which were similar to those of continuous quality improvement (CQI). Although this is an imperfect example of CQI implementation in a regulatory organization, it contains important lessons that may be helpful in integrating the CQI philosophy into other external review efforts.

CHESS (the Comprehensive Health Enhancement Support System) is an interactive, computer-based system to support people facing health-related crises or concerns. CHESS provides information, referral to service providers, support in making tough decisions and networking to experts and others facing the same concerns. CHESS will improve access to health and human services for people who would otherwise face psychological, social, economic or geographic barriers to receiving services. CHESS has developed programs in five specific topic areas: Academic Crisis, Adult Children of Alcoholics, AIDS/HIV Infection, Breast Cancer and Sexual Assault. The lessons learned, and the structures developed, will serve as a model for future implementation of CHESS programs in a broad range of other topic areas. CHESS is designed around three major desired outcomes: 1) improving the emotional health status of users; 2) increasing the cost-effective use of health and human services; and 3) reducing the incidence of risk-taking behaviors that can lead to injury or illness. Pilot-testing and initial analysis of controlled evaluation data has shown that CHESS is extensively used, is useful and easy-to-use, and produces positive emotional outcomes. Further evaluation in continuing.

There have been few detailed evaluations of measures of quality of care in nursing homes. This is unfortunate because it has meant that much research on factors affecting nursing home quality has used measures of questionable reliability and validity. Moreover, some measures currently in use have been developed using methodologies not based on solid conceptual grounds, offering little reason to expect them to have much internal or external validity. In this article we suggest characteristics that should be present in measures of nursing home quality, propose a methodology for the development of such measures, propose a specific nursing home quality measure (the Quality Assessment Index or QAI), and report the results of several tests of its validity and reliability.

Improvement in the quality of evaluation and treatment of behavioral emergencies presenting to hospital emergency rooms requires a multicomponent assessment of resources, clinician performance, and outcome. The authors present a summary of data and conclusions derived from index-based assessment of quality of care in over 2000 psychiatric emergencies. The study revealed that emergency room physicians rendered high-quality medical care, but were deficient in crucial aspects of psychiatric evaluation and treatment including evaluation of dangerousness and substance abuse and provision of appropriate follow-up care. A positive association was observed between quality of care and compliance with referral. Subsequent review with the staff pointed to issues such as staffing, emergency room and community resources, and adequacy of documentation as significant influences on quality of care, as assessed by the chart-audit, index approach. A pilot study demonstrated uniform improvement of quality scores in a small group of physicians receiving written and oral feedback about their performance. The use of focused quality assessment studies that examine both structural and process factors, and their correlation with outcome, is discussed in light of the information obtained from the previously described study. A feedback methodology that emphasizes an interactive process to identify deficiencies in care and to explore their causes and remedies is presented.

Under existing federal regulations, it is mandated that the care of all nursing home residents be reviewed annually. A four-year demonstration project in Wisconsin tested a sampling approach to nursing home resident review. The rationale for the sampling approach is that one can more effectively identify pervasive problems with resident care by an in-depth examination of a sample of residents than by cursory assessment of all residents. If problems are identified in the sample, all residents can then be reviewed. However, reimbursement for nursing home care is also influenced by level of care and given that nursing home inspectors review the appropriateness of level of care, the issue arises as to what impact a sampling approach would have on reimbursement. This evaluation compares the changes in reimbursement owing to resident review under the sampling and federally mandated, 100% review methods. The results indicate that reviewing a sample of nursing home residents may offer similar reductions in nursing home reimbursement as a 100% resident review--but at a lower cost.