Abstract:
This guideline is a manual of selected protocols for the evaluation and management of the initial stage of infection caused by the human immunodeficiency virus (HIV). It consists of the recommendations of a national, private-sector panel of physicians, dentists, nurses, nurse practitioners, physician assistants, social workers, and medical consumers. These recommendations were made as a result of an exhaustive search and analysis of relevant literature and the extensive clinical experience and expertise of panel participants. Whenever possible, the recommendations were based on an evaluation of published evidence. When scientific evidence was inadequate, panel consensus was used as the basis for recommendations. Each recommendation is followed by a rating that indicates the degree to which it is evidence based. Public testimony, peer reviews, and a feasibility review were also part of the guideline's development process.
Key topics addressed n the guideline include: antiretroviral therapy and disclosure of HIV status; monitoring of CD4 cell counts and initiation of PCP prophylaxis; testing and preventive therapy for tuberculosis and syphilis; conduct and timing of oral examination eye examination, and Papanicolaou smear assessment; pregnancy counseling; care for adolescents with HIV infection; evaluation and management of early HIV infection in infants and children; case management for persons living with HIV; and access and availability of care. It should be noted that the guideline does not represent a comprehensive guide to early HIV care; rather, it details only selected aspects of such care.
Abstract:
This Quick Reference Guide for Clinicians contains highlights from the Clinical Practice Guideline on Evaluation and Management of Early HIV Infection, which was developed by a private-sector panel of health care providers and consumers. Selected aspects of evaluating and managing patients, both adults and children, who are in the early stages of human immunodeficiency virus infection are presented. Topics covered include disclosure of HIV status, monitoring of CD4 lymphocyte counts, prevention of Pneumocystis carinii pneumonia and infection with Mycobacterium tuberculosis, initiation of antiretroviral therapy, treatment of syphilis, eye and oral care, performance of Papanicolaou smears, diagnosis of HIV infection in infants and children, preventive therapy for PCP and assessment of neurologic problems in HIV-infected children, pregnancy counseling, and development of a comprehensive case management system. Algorithms are included that show the sequence of events related to evaluating and managing early HIV infection in adults and children, as well as drug dosing tables for antiretroviral, PCP, and M. tuberculosis therapies.
Abstract:
{jft} The continued spread of HIV infection among women and children has not been part of health services research agenda. This study summarizes findings on local commnity responses towards prevention, identification, treatment and support service delivery from case studies of programs and services for pediatric and maternal HIV disease in seven U.S. cities. Data was collected from on-site provider interviews of hospital-based and community-based agencies. Issues covered in the interview included: availability/accessibility/utilization of services, continuity of care, case management, interagency cooperation, service gaps, barriers to care, underserved populations, and delivery system strengths and weaknesses. The study did not include client interviews and is limited to the time period during and immediately preceding the site visits.
PART I: OVERVIEW
Introduction
Edidemiology
Methods
Sevices
Program Issues
Provider Assessments
Site Overviews
Summary and Conclusions
PART II: CASE STUDIES
Baltimore
Boston
Bronx
Chicago
Los Angeles
Miami
Newark
Abstract:
This research explores the impact of interview mode on respondents' willingness to reveal illicit or undesirable behavior and mechanisms by which interview mode influences response tendencies. A field experiment was designed to control mode effects due to sampling and screening so that the impact of response anonymity (through use of self-administered questionnaires [SAQs] and social distance in the interviewer-respondent relationship (telephone vs. personal communication) could be tested. Respondents aged 18-45 were randomly assigned to interview model: telephone, face-to-face, or self-administered. Admission of illicit drug use and alcohol use was most likely in the personal model with SAQs, and least likely in the telephone model. The magnitude of mode differentials was larger for blacks than whites, and larger among respondents who are more mistrustful of others. Results support the notion that response effects due to mode of interview derive, at least in part, from interview mode differences in ability to assuage respondents' confidentiality concerns. Greater social distance between interviewer and respondent in the telephone interview, compared with face-to-face communication, makes it more difficult for the researcher to make convincing confidentiality guarantees. The response anonymity provided by SAQs also appears to increase respondents' willingness to reveal sensitive behavior, especially among racial/ethnic minorities.
Abstract:
This report, ther first in a proposed series presenting findings from ACSUS, introduces the study by providing a broad overview of data ollection procedures and by describing policy issues to which the data will be relevant. This report only outlines sampling procedures: future reports will present more comprehensive descriptions of research methods and sample characteristics.
Abstract:
Despite considerable enthusiasm for the concept, quality-of-life or health status outcomes are seldom employed in clinical trials. The failure of common analytic procedures to meet key requirements may have contributed to this limited acceptance. In particular, (1) results of clinical trials must be expressed in terms that clinicians, regulators, administrators, and patients find useful, (2) reasonable means of summarizing outcomes should be available a priori, (3) scale units should have real world meaning, (4) unwarranted assumptions regarding scale properties should be avoided, and (5) adequate methods for handling attrition due to death or drop-out are necessary.
Our groups has developed approaches to these problems. We summarize overall outcome using a weighted sum of scores for scales covering several domains and weights derived from regressions of scale scores on a reference variable. Out multistate survival analysis, an extension of standard survival analysis attempts to circumvent some of the difficulties with attrition and poor scale properties of health status/quality of life measures. Multistate survival analysis has two components, a description of survival-in-state, and significance test based on transitions-from-state. In survival-in-state analysis, we generalize the usual survival analysis to consider the proportions of participants with a health or quality status which is a least equal to that indicated by specified ordered states. In transition-from-states analysis, we generalize the Mantel-Haenszel procedure to simultaneously consider upward and downward transitions from previous health or quality state to improved or worsened states. These approaches incorporate mortality without requiring specification of a score value for death, allow reasonable handling of attrition, give results denominated in proportions or time units rather than score values, and allow assessment of net changes in status for individual participants between evaluations.
KEYWORDS: Clinical trials, HIV infection, AIDS, quality-of-life, health status, survival analysis.
Abstract:
Health-related quality-of-life measures adapted from the Medical Outcome Study (MOS) scales have been shown to be useful and highly reliable in HIV-infected populations, but acceptance of these measures has been limited in part by concerns over investigator, patient, and data burden. We sought to address these concerns by reducing the number of items in the MOS scales rather than by reducing the number of domains covered. Item content and number was selected according to static and dynamic relationships to the full scales and to indicators of clinical and functional status in 10,399 responses from 1,934 participants, as well as in relevant subpopulations. The resulting scales have a total of 20 items as compared to 38 in the original instrument. Correlations between short and long scales were excellent. At .78 to .85, the reliability of the subscales was lower than that of the full scales. However, compared to an index based on the longer scales, an index based on the subscales had identical reliability, yielded nearly identical values, and was as sensitive in detecting treatment differences in an actual clinical trial. The resulting instrument continues to cover disability, work, utilization, and health status, but is less than 1/2 the length of our previously available comprehensive questionnaire.
KEYWORDS: quality of life, health status, AIDS, HIV
Abstract:
Acceptance of health status as an outcome in clinical trials of new treatments for HIV disease has been hampered by the lack of valid and clinically relevant means of summarizing differences across multiple dimensions. We formed a summary Perceived Health Index from health status measures adapted from RAND Medical Outcomes Study scale and contained in the HIV-PARSE survey instrument, which had been administered to a large number of participants in clinical trials for advanced HIV disease. The psychometric properties of the included health status scales were assessed using multitrait scaling and test-retest stability. Weights for the index were derived from regressions of Current Health Perceptions on the domain-specific health status scales. The effect of participant characteristics on weights was tested. Finally, the reliability and known-clinical groups validity of the index was assessed.
Data were obtained from 1,862 clinical trial participants who provided a total of 7,352 observations. The mean CD4 count was 131. The internal consistency reliability of the multi-item scales ranged from 0.86 to 0.90, and items demonstrated excellent discrimination across scales. The domain-specific scales explained 59% of the variation in the Current Health Perceptions scale (P <0.00001). The resulting Perceived Health Index was equal to 0.20 Physical Functioning + 0.15 Pain + 0.41 Energy/Fatigue + 0.10 Emotional Well-Being + 0.05 Social Functioning + 0.09 Role Functioning. The strong positive bivariate relationship between the Cognitive Function/Distress scale and the Current health Perceptions scale was subsumed by the combination of the other domain-specific scales in multiple regressions, so it does not appear independently in the index. The proportional weights used in the index were insensitive to variations in demographics. The reliability of the index was conservatively estimated to be 0.94. Patients with index scores in the lowest quartile had a 2- to 11-fold higher probability than those in the highest quartile of reporting various specific clinical events, and the index correlated significantly more highly with the number of such events than did the current health perceptions scale. The modified MOS health status scales included in the HIV-PARSE are reliable and valid in patients with advanced HIV disease. The Perceived health Index provides a reliable and valid means of summarizing self-reported current health, correlates strongly with clinical indicators, and should be useful as an outcome measure in patients enrolling into clinical trials of therapies for advanced HIV disease. Regression based weights are a useful means of summarizing multidimensional measures.
KEY WORDS: quality of life; health status; AIDS.
Abstract:
This study measured the migration of persons with the acquired immunodeficiency virus (AIDS) between diagnosis and death using AIDS case and death reports from 12 states for 1985 to 1992. Of 49,805 persons with AIDS, 10.6% changed their place of residence, and half of these individuals who moved changed their state of residence. Migration had relatively little impact on the numbers of persons with AIDS in the larges metropolitan areas, which accounted for approximately 90% of AIDS diagnoses. Although only 3% of deaths occurred in residents of nonmetropolitan areas, the net effect of migration was a 24% increase in the number of persons with AIDS residing in such areas.
Abstract:
{jft} This presentation serves to define how the proposal review process of AHCPR in general is applied specifically to the HCSUS study. Outline of the presentation:
Conflict of Interest
Reviewer Certifications
Study Section Expertise
Review Procedures
Review Categories:
Significance and Originality
Methods
Data
Project Organization
Women and Minority Subjects
Investigators
Budget
Facilities/Resources
Human Subjects
Importance and Impact
Rating Scale
Abstract:
This document presents conclusions and recommendations from a workshop convened to discuss national estimates of human immunodeficiency virus (HIV) prevalence, acquired immunodeficiency virus (AIDS) case projections, and the proportion of HIV-infected persons with laboratory evidence of immune dysfunction. Appendices describe analyses performed before and after the workshop to estimate HIV prevalence and to predict future AIDS cases, the prevalence of persons with AIDS, and deaths among persons with AIDS.
On the basis of these analyses, CDC estimates that approximately 750,000 persons in the united Sates were infected with AIDS at the beginning of 1986 and that approximately 1,000,000 Americans are currently infected with HIV. At least 40,000 new HIV infections occur each year among adults and adolescents, and an estimated 1,500-2,000 new infections occur each year among newborns as a result of perinatal HIV transmission. Approximately 60% of the estimated 1,000,000 HIV-infected persons in the United States may have T-helper lymphocyte (CD4+ cell) counts of <500/mm3 of blood and may benefit from early treatment with zidovudine.
The number of AIDS cases will continue to increase over the next 4 years, with a projection of 52,000-57,000 cases to be diagnosed in 1990. Both AIDS case projections and HIV-prevalence estimates are influenced by the slowing of the rapid upward trend in AIDS incidence that occurred in 1987, particularly among homosexual and bisexual men who are not intravenous drug users. Data available during and after the workshop suggest that medical therapy or a decline in the incidence of new HIV infections among homosexual men in the early 1980s could have contributed to this change in trend, but the relative contributions of these and other factors (including changes in the completeness or timeliness of AIDS case reporting) require further study.
Abstract:
This report presents projections of the number of persons who will initially be diagnosed with a condition included in the 1987 surveillance definition for acquired immunodeficiency syndrome (AIDS) in the United States during the period 1992-1994. The report also presents estimates and projections of the prevalence of persons infected with the human immunodeficiency virus (HIV) who have CD4+ T-lymphocyte (T-cell) counts <200/uL and who have not been diagnosed with a condition listed in the 1987 AIDS surveillance definition. These estimates and projections are used to predict the effect of expanding the AIDS surveillance definition to include all HIV-infected persons with a CD4+ T-cell count <200/uL.
Approximately 58,000 persons were diagnoses with AIDS in the United States during 1991. During the period 1992-1994, the number of persons newly diagnosed with AIDS is expected to increase by at most a few percent annually, with approximately 60,000-70,000 persons diagnosed per year. Although AIDS diagnoses among homosexual and bisexual men and among injecting drug users are projected to reach a plateau during this period, the number of AIDS diagnoses among persons whose HIV infection is attributed to heterosexual transmission if HIV is likely to continue to increase through 1994. The number of living prisons who have been diagnosed with AIDS is expected to increase from approximately 90,000 in January 1992 to approximately 120,000 in January 1995. There is, however, considerable uncertainty in these projections. For example, the plausible range for the number of persons initially diagnosed with AIDS in 1994 is 43,000-93,000.
CDC estimates that, as of January 1992, 115,000-170,000 U.S. residents had severe immunosuppression (a CD4+ T-cell count <200 cells/uL without a diagnosis of AIDS in an HIV-infected person). Only about 50,000 of these persons were receiving medical care for HIV-related conditions and were known to have a CD4+ T-cell count <200 cells/uL. The number of persons with severe immunosuppression is expected to increase to 130,000-205,000 by January 1995, with the actual number more likely to be in the lower half of this range than the upper half. The expanded AIDS surveillance definition, which includes severe immunosuppression, is predicted to result in an increase of approximately 75% in the number of persons reported during 1993, but an increase of <20% in 1994 compared with the number of persons who would have been reported had the definition not been changed.
The projections made in this report demonstrate that the number of U.S. residents with HIV-related morbidity is unlikely to decrease, and in fact is likely to increase over the first half of the 199s.
Abstract:
The Centers for Disease Control and Prvention has published predictions of the number of persons in the United States who will be diagnosed with acquired immunodeficiency syndrome (AIDS) during 1992-1994, the number of immunosuppressed persons during 1992-1994 who were infected with the human immunodeficiency virus (HIV), and the number of persons who will be reported to AIDS surveillance during 1993 and 1994. This report contains information about the data and methods used to make those predictions. Section A contains information concerning the AIDS case projectsions, incuding detailed information about the back-calculation models used to make the projections and comparisons of the assumptions in these models with data. Section B describes the stochastic model used to estimate thenumber of persons with severe immunosuppression and the number of persons who will be reported to AIDS surveillance.
Throught this document, "AIDS" refers to a person diagnosed with a condition in the 1987 AIDS surveillance definition. "Severe immunosuppression" means a CD4+ T-lymphocyte count (CD4+ T-cell count) <200/uL in an HIV-infected person who has not developed AIDS. Unless otherwise indicated, "therapy" means antiretroviral therapy or therapy to prevent the developement of Pneumocystis carinii pneumonia (PCP).
Abstract:
The interview is based on an interview protocol developed to evaluate the quality of the interpersonal aspects of care provided to medical and surgical patients in medical and surgical units of general hospitals throughout the United States. The areas of care addressed by that survey are respect for patient preferences, patient education, financial information and counseling, communication between patients and providers, emotional support, family involvement, physical care and pain management, and discharge preparation.
The original interview was adapted to address the issues of special relevance to AIDS patients, including trusting the staff with confidential information, AIDS-related knowledge of staff, and perceived segregation because of AIDS. All the questions about problems ask the respondent to say whether the event had occurred (yes/no). It also includes several open-ended questions such as, "Was there anything that you think should have been done for you in the hospital that was not done?" and included open-ended probes after several questions to gather information on the types of problems that patients were thinking about when responding to particular questions.
Abstract:
PURPOSE: To describe the migration patterns of patients infected with the human immunodeficiency virus (HIV) who seek health services in North Carolina.
PATIENTS: Of 390 consecutive HIV-infected adult patients seen at one tertiary care medical center in the Southeastern United States in the summer of 1990, 340 (87%) were approached, and 325 (83%) completed surveys.
RESULTS: Thirty-seven percent of respondents thought they had been infected and 20% were told they were infected with HIV while living outside of North Carolina. One in five patients thought they had been infected while living in a rural county and more than half now live in rural communities (population of <50,000). Sixty percent of patients had moved to North Carolina since 1980; 61% of these were North Carolina natives. Injecting drug users were more likely than those with other modes of exposure to HIV to have been diagnosed with HIV infection out-of-state (34% vs. 18%, P=0.03). Patients' reasons for moving to North Carolina included social support (88%), health reasons (54%), and better work/educational opportunities (52%).
CONCLUSIONS: Most HIV-infected patients who seek health care services in North Carolina live in rural areas with their families, and a substantial proportion migrated in after they were diagnosed out-of-state. Characterizing these migration patterns is crucial for predicting the diffusion of HIV to rural areas; designing AIDS prevention strategies, education and health service needs; and assessing federal HIV care funding policies.
KEYWORDS: HIV, AIDS, Health Services Availability, Rural Health, Health Services Research, Intravenous drug use, Urban Population
Abstract:
A delay in the inpatient evaluation and treatment of symptomatic patients with HIV-related complications could have a number of adverse consequences. Patients might be admitted with more severe illness. They might be more likely to die sooner. Before they receive hospitalization, their quality of life might decline and become worse than it would have been had they obtained care more promptly. While patient factors such as fear, denial of symptoms, lack of compliance, lack of knowledge, and lack of recognizing serious symptoms (Worden 1975; Jones 1981; Temeshok 1984) may be responsible for some delays in seeking care, inadequate access to medical care is also thought to be an important policy determinant of delays in obtaining care (Weissman 1991; Greenwald 1987).
Improving access to medical care is a major goal of current national health care reform initiatives. In this context, insurance status, the most widely used measure of access in previous studies, may become a poor measure of access in the future if everyone is covered under the same or "equivalent" systems of care. Access measures that detect barriers related to delays in receiving needed care, and that are also related to health outcomes such as quality of life will be critical for evaluating access in any future system of care. To date, there has been little research on the relationship between access to medical care, quality of life, and of either of these variables to delays in hospitalization.
To explore the relationship between delays in obtaining hospital care, accessibility of care, and quality of life we assessed a series of HIV positive patients at the time of their first or second hospitalization for HIV-related complications. Unlike community dwelling samples, hospitalized patients have clearly been in need of prompt medical intervention. This study addressed several questions: 1) what is the frequency and distribution of hospitalization delays and barriers to outpatient care prior to hospitalization? 2) how are delays to hospitalization related to access barriers? and 3) how are both hospitalization delays and access barriers related to quality of life?
Abstract:
To examine the feasibility of monitoring the performance of health care systems with an instrument measuring access to medical care, we conducted a cross-sectional study of access to care and its association with health-related quality of life. Using a 9-item measure of perceived access, and a 55-item health-related quality of life instrument, we surveyed 205 low income, symptomatic, HIV-infected individuals with constitutional symptoms or diarrhea at one public and one Veterans Administration hospital. Access problems were prevalent: 48% had problems covering costs of care, 48% had problems with clinic hours, and 38% had problems obtaining medical care when needed. In multivariate analyses, uninsured patients reported worse access than patients with Medicaid or Veterans Administration insurance, particularly for covering the cost of care (p < 0.01). Worse access to care was significantly (p < 0.03) associated with poorer health-related quality of life for 8 of 11 quality of life sub-scales. The access to care measure detected cross-sectional relationships to both insurance status and health-related quality of life in our sample of patients with HIV infection. Access measures such as this may prove useful in the prospective assessment of the performance of health care systems serving poor, clinically ill populations.
KEYWORDS: health services accessibility, quality of life, health status, acquired immunodeficiency syndrome (AIDS)
Abstract:
{jft adapted} OBJECTIVES: Evaluate a new measure of access to care in low income, symptomatic, HIV-infected patients; assess the prevalence of specific access problems; and examine the effect of access on quality of life.
SIGNIFICANCE: Access to early treatment in HIV disease can reduce morbidity. Specific access measures will be needed to evaluate health care reform. Access problems are more important if they result in poorer health.
DESIGN: This is a cohort study of 205 HIV positive patients in one county and one VA hospital. Two face-to-face interviews are done: at baseline and 100 days later.
MEASURES: The access measures are derived from Aday and Andersen (1980). There is a total of 4 measures with a 9-item scale of perceived access and 3 individual items to measure temporal access. The quality of life measures are adapted from the Medical Outcomes Study (MOS).
RESULTS: At the 3-month follow-up, 2 of 11 quality of life scores were significantly associated with higher perceived access and 7 others had a similar trend in the same direction (P<0.02, overall) Three of 11 quality of life scores were significantly associated with bettere transportation access (NS overall). The magnitude of difference in overall quality of life scores between high and low perceived access was 9 out of 100 points. This is similar to the difference in quality of life between pateints who had fever at baseline and those who did not.
CONCLUSIONS: Better perceived access predicts better 3-month quality of life for some dimensions in HIV-infected patients. The low income, HIV-infected patients studied have extensive problems with access to care. To assess the impact of access to care problems, additional studies should prospectively assess the effect of access on quality of life outcomes.
Abstract:
To stimulate research on HIV service delivery and evaluation of human immunodeficiency virus (HIV) service programs, the Health Resources and Serices Administration (HRSA), the Agency for Health Care Policy and Research (AHCPR), and the National Community AIDS Partnership (NCAP) convened a working meeting in Washington, DS, on November 12 and 13, 1992. Approximately 50 persons from throughout the country participated, including experts in research and evaluation, policymakers, advocates, people with HIV, HIV service providers, and representatives of private and public funding organizations. This diverse group came together to discuss major research and evaluation questions related to the delivery of HIV services and to initiate a plan of action to generate the knowledge needed to make informed and responsive policy decisions. This document presents the findings of the meeting in the hope that readers will work with research- and evaluation-sponsoring organizations and others to undertake these key evaluation and research activities.
This is a crucial time in the national response to the HIV epidemic. Implementation of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, related Federal HIV programs, and a range of private-sector initiattives currently are highlighting many questions related to service delivery and community-based planning questions. More focused research and evaluation are needed to ensure that policy decisions lead to effective and efficient provision of services to persons with HIV in the 1990s and beyond.
The meeting participants identified and prioritized approximately 50 research questions. In small groups, the participants developed potential research and evaluation studies for nine key areas. The point of departure for each small group was the relevant existing research and evaluation activities in the group's study area(s).
Abstract:
Objective: To analyze the costs and benefits of alternate cervical cancer screening schedules among elderly women.
Setting: Population-based screening programs
Design: A Markov model predicts the outcomes of periodic screening, diagnosis, and treatment for cervical cancer among women from 65 to 109 years of age.
Patients: A hypothetical cohort of one million 65-year-old women, representative of the U.S. population.
Measurements: The costs and yields of screening.
Results: Triennial screening reduced mortality from cervical cancer among the elderly by 74% at a cost of $2254 per year of life saved. Annual screening increased costs to $7345 per year of life saved; less frequent schedules yielded lower costs but decreased savings in life. There results were most sensitive o the quality of the Papanicolaou smear and the characteristics of the women using the benefit. If the sensitivity of the papanicolaou smear was reduced from a baseline estimate of 75% to 50% and the specificity was decreased to 87% from 95%, the cost effectiveness ratio increased by nearly $7000 per year of life saved. If triennial screening is targeted to women who have not had regular screening, the program will save money as well as years of life; however, screening women who have been screened regularly is considerably less efficient, increasing costs to $33,572 per year of life saved.
Conclusion: the success of the new Medicare benefit depends substantially on physicians assuring that their elderly patients, particularly women without regular prior screening, obtain high quality Papanicolaou smears. The data also show that after a women 65 years of age or older has a history of regular negative smears, screening is inefficient and can cease.
Abstract:
An AIDS unit model ("cluster beds") and a general inpatient placement model ("scatter beds") in a major teaching hospital were compared to determine whether they differed on several dimensions of care.
After controlling for severity of illness, (the major predictor of admission to he AIDS unit), length of stay, charges, and inpatient mortality rates did not differ between the two settings. Equal proportions of White, Hispanic, male, and privately insured patients were found in both settings. Nursing staff turnover rates were comparable to those of other sites. However, the data raise new issues regarding access to AIDS units for older, Black, and female patients.
Abstract:
Objective: To examine factors affecting the utilization of inpatient, outpatient, and emergency room services by people with HIV infection.
Data Sources and Study Setting: Study participants are adults with HIV infection receiving services at major providers of medical care in 10 U.S. cities. Six interviews were conducted over an 18-month period. Analyses use 1600 respondents who completed the second and third interviews. Data on service utilization, personal background characteristics, insurance status, and functional status are based on self-report. Disease stage is based primarily on medical record data.
Study Design: Linear and Poisson regression analyses were conducted to determine the effects of need, enabling, and predisposing factors on the dependent variables of ambulatory visits, emergency room visits, inpatient admissions, and average length of inpatient stay. Independent variables were measures as of the second interview, while dependent variables were measures for the third and fourth interview periods.
Principal Findings: Service utilization was higher among respondents with AIDS that among those at earlier stages of HIV infection. Functional limitations, experienced pain, and negative mood each were associated with increased service use, over and above disease stage. Black respondents reported more hospital admissions and longer lengths of inpatient stays than white respondents. Lack of insurance was related to reduced service use. The effects of disease stage and functional limitations were reduced among people with public, compared to private insurance.
Conclusions: While disease stage affects use of medical care, the experience of adverse HIV-related conditions, such as pain or functional limitations, has an additional effect on service use. Persistent racial differences in utilization remain to be explained. Lack of insurance impedes use directly and also modifies the effects of disease stage and functioning.
Key Words: HIV infection, AIDS, service utilization, health insurance, health status.
Abstract:
In the fall of 1989, we began a longitudinal survey of persons with acquired immune deficiency syndrome (AIDS). The goals of the study were to identify ways in which the formal and informal services that patients receive affect their survival, quality of life, and costs of care.
Our study population consisted of persons whose HIV infection met the centers for Disease Control's criteria for AIDS and who were patients at one of three sites in metropolitan Boston: a health maintenance organization (HMO), an AIDS clinic in a city hospital, and a large hospital-based group practice.
The research team included physicians and epidemiologists with extensive direct experience in working with persons with AIDS (PWAs) and survey research methodologists who had many years of practical experience in collecting data from all kinds of populations. Yet at each phase of this project, as others have reported, challenges were encountered for which neither the experience of the investigators nor the published literature offered ready solutions. The purpose of this report is to describe the methodological problems we encountered and the lessons we learned.
Abstract:
{jft} Non-response is a factor whether an entire population or a sample of a population is studied. There are two approaches to dealing with non-response: minimize the amount of non-response, and attempt to assess the degree and extent to which non-responding units differ from responding units. Several models for such assessment exist. The model used in HCSUS is an examination of the relationship between measured and unmeasured variables.
Abstract:
The clinical course of HIV disease is complex, with a variable prodromal period of perhaps 10 years followed by an accelerating course of opportunistic infections and intercurrent illness resulting in death after a further 1 or 2 years. The disease has impacts in the interacting domains of mortality, morbidity, specific infections, quality of life, social and mental functioning, resource utilization, employment, and health care costs. systematic study this requires multidisciplinary and longitudinal data, and a study strategy employing investigators from multiple disciplines with differing perspectives and questions enabling multiplier effects to increase productivity from a multiple use data resource.
This Program provides and utilizes a large longitudinal HIV patient data resource and multiple collaborators from many institutions toward goals of improvement of the quality of life of the HIV-infected patient, development of guidelines and protocols for more effective management of these patients, and of more humane and effective allocation of resources. The program proposes (A) to complete a series of Systematic Studies in the areas of (1) disease costs and financing, (2) drug effectiveness, toxicity, and cost, (3) delivery systems and practice variations, (4) health status and quality of life, and (5) modeling of disease transitions, (B) to provide and use a new structure for Rapid Response to newly-arising policy questions, such as evaluation of newly released practice guidelines, with an analytic time frame of 103 months, and (C) to provide a large multi-disciplinary HIV Data Resource to an enlarging network f outside investigators and collaborators.
The Program utilizes longitudinal data on 5,00 to 7,000 HIV-infected individuals, with 2,000 to 3,000 intensively studied patients, derived by consecutive patient enrollment at 9 HIV-oriented practices and clinics. Data include clinical, laboratory, diagnostic, therapeutic, quality of life, cost, insurance, demographic, and mortality variables. Patients are assessed at intervals of 3 months or less. The Program has current patient follow-up averaging 2 to 4 years, validated quality control, outcome assessment, and follow-up protocols, established computer procedures and statistical approaches a multidisciplinary core staff of physicians, biostatisticians, epidemiologists, health economists, information scientists, and health policy investigators, and a collaborative network of investigators from Duke University, University of California at San Francisco and at San Diego, Stanford University, Georgia State University, University of Cincinnati, San Francisco General Hospital, and Beth Israel Hospital.
Thus, this program provides a prospectively organized multiple use resource for systematic policy study of HIV-associated illness and for a rapid investigative response to new issues as they arise.
Abstract:
OBJECTIVE: To explore the extent to which primary care physicians are providing health care for people with human immunodeficiency virus (HIV) infection and to document barriers to HIV care giving.
DESIGN: national random-sample mailed survey.
PARTICIPANTS: Population-based random sample of 2004 US general internists, family physicians, and general practitioners in 1990. Response rate was 59%.
MAIN OUTCOME MEASURES: HIV Treatment experience, willingness to treat HIV-infected patients, negative attitudes toward homosexuals and intravenous drug users, fear of contagion of the acquire immunodeficiency syndrome (AIDS), perceived lack of information about AIDS, and time demands of HIV care.
RESULTS: Most physicians (75%) had treated one or more patients with HIV infection. A majority (68%) believed that they had a responsibility to treat people with HIV infection, yet half (50%) indicated that they would not, if given a choice. Over 80% of respondents believed that they lacked information about AIDS and that caring for people with AIDS is time consuming. Further, 35% of respondents agreed that they "would feel nervous among a group of homosexuals" and 55% expressed discomfort about having intravenous drug users in their practice. Physicians who had treated 10 or more HIV-infected patients expressed less negativity toward members of these stigmatized groups who are likely to be HIV infected.
CONCLUSIONS: These data suggest that many primary care physicians are responding professionally to the AIDS epidemic but that attitudinal barriers may be hindering some physicians from providing treatment to HIV-infected patients.
Abstract:
Estimating the current prevalence of human immunodeficiency virus (HIV) and projecting the future incidence of AIDS require that trends in incidence be analyzd and interpreted. We analyzed AIDS incidence trends in the United States by exosure category and selected demograhic factors. In 1987, the trned in Unites States aIDS incidence changed as growth in the number of cases diagnosed er quarter began to decline. The slowing in growth is due n large part to a plateau in quarterly incidence in men who have sex with men in the New York City, San Francisco, and Los angeles metropolitan statistical areas (MSAs), and in injecting drug users in the New York City MSA and new Jersey. Incidence has also reached a plateau in both adult/adolecent and pediatric blood and blood product recipients. Quarterly U.S. AIDS incidence was roughtly constant during 990, but appears to have increased to a higher level during the first half of 1991. The variation in incidence trends among subgroups suggests that several factors have affected the trend in total incidence andthat the burden of severe symptomatic HIV disease may be shifting.
Key Words: Epidemiology--United States
Abstract:
OBJECTIVE: The volume and cost of services consumed by persons with AIDS (PWAs) during their last months of life are examined in this study.
DATA SOURCES: This study utilizes data from the AIDS Cost and Services Utilization Survey (ACSUS). The ACSUS is the most comprehensive survey of medical services that are consumed by persons with HIV.
STUDY DESIGN: This study is restricted to persons with AIDS who survived the fifth time period (an approximately three-month period in the early spring and summer of 1992). The types and costs of services consumed during the fifth time period by PWAs who did survive (609) and who did not survive (79) the sixth time period are compared.
DATA COLLECTION: The ACSUS consists of six interviews over an 18-month period from Spring 1991 to Fall 1992.
PRINCIPAL FINDINGS: Decedents were hospitalized more than four times as many days and experienced more than four times the number of home health visits as survivors. Both the average length of stay (19.3 days for decedents and 10.3 days for survivors) and the frequency of hospitalization during the fifth time period (.70 for decedents and .28 for survivors) were higher for decedents than survivors. The levels of outpatient care (including emergency room care) and of prescription drug use were similar for decedents and survivors.
CONCLUSIONS: This study shows that the cost of treating decedents is more than three times the cost of treating survivors.
KEYWORDS: HIV, AIDS, survivor and decedent costs.
Absract:
This is the first paper to forecast the cost of medical care for all people with the human immunodeficiency virus (HIV). Previous studies have concentrated on the cost of treating people with AIDS (PWAs). It is estimated that the average cost of treating a person with HIV without AIDS is $5,150 per years, and that the average cost of treating a PWA is $32,000 per year ($24,000 for inpatient hospital care and $8,000 for other services). The lifetime cost of medical care for a PWA is calculated to be $85,333. This is higher than many previous estimates of lifetime costs due to increased longevity and the diffusion of costly outpatient drugs. The cost of treating al people with HIV in 1991 is forecast to be $5,8 billion. Of this amount, it is estimated that $1.4 billion will be spent on people with HIV without AIDS, and the remaining $4.4 billion on PWAs. It is forecast that the cost of treating all people with HIV will increase 21% each year between 1991 and 1994, and that $10.4 billion will be spent on treating all people with HIV in 1994.
Abstract:
We studied the cost of acquired immunodeficiency syndrome (AIDS) in the Kaiser Permanente Medical Care Program (KPMCP), northern California region. We report the costs of care to the KPMCP and introduce an innovative application of survival methods to cost analysis. From the beginning of the AIDS epidemic in 1981 to the end of June 1987, 866 cases of AIDS were recorded among members of the KPMCP. Estimates of the costs of care of these patients were derived from comprehensive chart reviews of a random sample of 71 patients whose conditions were diagnosed from January 1984 through June 1987. Total mean lifetime costs per patient were $32,816 (median, $28,677), whereas the mean hospital per diem cost was $20,446 per patient. As more care was shifted to outpatient services over time, overall costs dropped, despite marked increases in the cost of outpatient medications such as zidovudine. The overall estimate of cost compared closely with other estimates of the cost of care in San Francisco, Calif., and it is lower than estimates from elsewhere in the united States, probably because of the low proportion of cases associated with intravenous drug use and the well-developed social support networks available to patients with AIDS in the San Francisco Bay Area.
Abstract:
This is the sixth semiannual report from the Division of Research, Kaiser Permanente Medical Care Program (KPMCP), Northern California Region (NCR), on the epidemiology of AIDS and identified HIV infection among Kaiser Foundation health Plan members in the Northern California Region. The data presented in this report are drown from the regional AIDS Database, which is maintained by the Division of research, and are current for the period up to June 30, 1993. The AIDS Database, and this report, do not include data on HIV infected members who have not sought medical attention for an HIV related condition at a Health Plan facility.
This is the first semi-annual report in which we have switched to using only the new CDC definition which began to include asymptomatic persons with a CD4 count less than or equal to 200 cells per microliter. The result contributes to a 38% increase in the total number of members with CDC-defined AIDS from 3987 at the end of 1992 to 5505 at the end of June 193. This should not be interpreted as a real jump in the number of our members with HIV infection, but rather as a reporting phenomenon resulting from the change in the definition. had the old definition still been in force the cumulative number at the end of June would have been 4313, reflecting an 8.2% increase in the last six months compared to an 11.2% increase in the prior six month period.
Of the 5505 members who fit the CDC definition, 96.1% have been adult men and 3.7% have been adult women. There have been a total of 12 cases of pediatric (less than 13 years of age) AIDS cases, an increase of one in the last six months. the most common opportunistic infection that patients present with has been pneumocystis carinii pneumonia (PCP) with o without other diseases (39.1%), while 18.5% presented with other diseases without PCP and 11.3% with kaposi's sarcoma. Most (79%) of the new cases in the last six months have reached the definition of AIDS on the basis of their CD4 count and they now account for 21.7% of the total. Seventy-Two percent of cases have been white, 12% black, 8% Hispanic and 2% Asian. Most of the AIDS cases among our members have died (69%), 14% have left the health Plan with unknown vital status, and 1705 are active members, up 104% from the 834 members who met the old AIDS definition and were active at the end of 1992.
In addition to the 1705 currently active cases who meet the 1993 AIDS definition, there are 2651 active members identified with Pre-AIDS, HIV-related condition. The total of 4356 active members with known or presumed active HIV infection represents only a 0.4% increase over the total reported as of December 1992. The point prevalence of known cases as of 06/30/93 was 1.84 per 1000 members, compared to 1.85 six months ago. Of the 4356 active cases of HIV infection, 47% were first diagnosed at the San Francisco Medical Center and 12% at the Oakland Medical Center. However, HIV infected members have been diagnosed at all Health Plan facilities in the Northern California Region.
The incidence rate of known AIDS cases in the membership of the Kaiser Permanente medical Care Program in Northern California data suggests that peak incidence of new AIDS diagnoses occurred in 1991, although this assessment may change slightly as we accumulate more data. New cases of HIV infection seem to have peaked in 1989. However, the incidence of new cases of HIV infection among women is increasing while the rate among men is declining. Currently, 5.2% of active members with AIDS are women compared to 4.7% six months ago and 2.6% 12 months ago.
Our ability to identify cases of HIV infection among our pediatric population is compromised because their care is frequently managed outside the Health Plan and information about their condition is not always documented in their Health Plan medical record. The number of children under age 13 with known HIV infection has only increased from 26 to 27 since 12/31/92.
Abstract:
OBJECTIVE: To measure the utilization and cost of pediatric HIV-related health care services.
DESIGN: Cohort survey.
SETTING: Eight outpatient departments selected for serving large numbers of HIV-infected children in five Standard Metropolitan Areas selected for their high prevalence of HIV-infected children.
PATIENTS: 141 HIV-seropositive children (< 13 years old) aged 15+ months (CDC class P-1) or having clinical AIDS at any age (CDC class P-2) who visited the selected providers during the second quarter of 1991. This design excluded CDC class P-O patients. It randomly selected patients after stratification by disease stage.
INTERVENTIONS: None.
MAIN OUTCOME MEASURES: Quarterly interview survey (via adult proxies) of health services utilization during each preceding three month period. Repeated six times between March 1991 and August 1992. Charge data abstracted from inpatient, outpatient, home health, and pharmacy bills.
RESULTS: Participants averaged 1.1 hospitalizations of 12.7 days each, 1.9 emergency room visits, 17.4 ambulatory care visits, 13.6 nursing home health visits, 13.8 nonnursing home health visits, and 1.0 dental visit per year. This care cost an estimated $27,721 per child per year.
CONCLUSIONS: Prior studies relied on administrative data from a single hospital or a single insurer, and omitted services received at other hospitals and services covered by other insurers (as well as services provided at no charge). This study identified all services consumed by children with HIV infection. It combined information from adult Proxies about all the sources of care with data on charges obtained from the sources of care. This study finds the estimated annual cost of treating a child with HIV to be significantly lower than previously reported, and the cost of treating a child with AIDS to be comparable to the cost of treating an adult with AIDS.
KEY WORDS: AIDS (pediatric), health care costs, HIV (pediatric), health services, utilization
Abstract:
AIDS incidence trends vary greatly among geographic areas in the United States. We define clusters of areas within which AIDS incidence trends are similar, as areas within a cluster may have similar human immunodeficiency virus epidemic patterns and thus may lead to similar prevention/intervention strategies. Methods of exploratory data analysis are used to define such clusters from reported quarterly AIDS incidence to December 1990 (adjusted for estimated reporting delays) in homosexual and bisexual men not using intravenous drugs in 39 metropolitan statistical areas (MSAs) in the United States. After smoothing AIDS incidence in each MSA, we define groups from cluster analysis based on a measure of similarity between pairs of MSAs. A log-linear model gives estimates of the sale factors and the common trend for the MSAs in each group. Alternative metrics and simulated data suggest that the clustering is fairly robust to variations in AIDS incidence data. The resulting clusters separate MSAs with different trends, for example, MSAs in which AIDS incidence shows signs of reaching a plateau are separated from MSAs in which incidence continues to increase rapidly.
Abstract:
We examined geographic and racial/ethnic variation in acquired immune deficiency syndrome (AIDS) incidence in homosexual and bisexual men (i.e., men who report sex with men: MSWM) not using i.v. drugs in the United States. The AIDS incidence in these men has continued to increase in the United States. Incidence increased much less rapidly after 1986 in the three metropolitan statistical areas (MSAs) with the most cases, New York City, Los Angeles, and San Francisco, and may have reached a plateau in these areas. This change in incidence occurred in non-Hispanic black and Hispanic MSWM as well as in non-Hispanic whites in these MSAs, but earlier in whites. There have been similar changes in incidence (but later in time) in all other MSAs with a population of at least 1,000,000 combined, with more tendency toward a plateau in whites than in non-whites. In contrast, incidence increased linearly through 1989 in MSAs with a population <1,000,000 and in rural areas, with no change in trend after 1986. Changes in human immunodeficiency virus (HIV) infection incidence before 1985, better therapy and medical care, and migration all contributed to these changes in incidence, as may have changes in reporting. Continues HIV seroconversions among MSWM show that efforts to prevent HIV infection must be continued in all areas of the United States.
Key Words: HIV--Epidemiology--Homosexual/bisexual men--United States.
Abstact:
"We found that the errors that people make when they recall health events--that is, whether they under- or overreport--depend on exactly what people are being asked to recall. If asked to recall specific visits made over the previous year, people dramatically underreport. In experiment 1 fewer than 40% of actual visits were specifically recalled. If asked to estimate the number of visits made over the preivous year, without specifically remembering each one, people still underreport, but to a lesser degree. In experiment 1 the estimate of visits made was 87% of actual visits. A similar pattern of underreporting was observed when people recalled their spouses' visits over the previous year" (p. 133).
"By contrast, when people are asked whether they had a specific procedure (e.g., flu shot) in the recent past, they overreport. In experiment 4 the median amount of overreporting for the procedures we asked about in the six-month reference period was approximately 13%. For many procedures, two to three times as many people reported having had a procedure done as actually did" (p. 133).
"To reduce error in the reporting of procedures, we asked about procedures in either a single-time frame or two-time frames (experiment 4). We found that if respondents first answered about, say, a six-month reference period and then a two-month reference period, the overreporting problem was less severe than if we asked the two-month question first. The two-time-frame procedure may be beneficial because it conveys to the respondent a greater need for precision in answering" (p. 135).
Abstract:
Sample was drawn from 1984-1990 Longitudinal Study of Aging. Half of the people 55-64 years old and all those 65 and older in the National Health Interview Survey were eligible for the supplement on aging. Interviews were conducted at the individual's residence by the U.S. Bureau of Census personnel.
"Bivariate associations with higher mortality were consistently observed between NR/DK responses to three health status assessments (i.e., Global Self-Rated Health, Control Over Future Health, Activity Compared to Peers)" (p. 482).
* Global Self-Rated Health:
Would you say your health in general is excellent, very good, good fair, or poor?
* Control Over Future Health:
How much control do you think you have over your future health? Would you say you have a great deal of control, some, very little, or none?
* Activity Compared to Peers:
Compared to other persons your age, would you say you are physically more active, less active, or about the same? (followup to determine degree of more or less activity--much more, more, same, less, much less).
Abstract:
Several drugs and drug combinations are highly effective in preventing Pneumocystis carinii pneumonia (PCP). Although the incidence of PCP among human immunodeficiency virus (HIV) - infected adults has declined, no decline in PCP incidence has been observed in HIV-infected children, and PCP remains the most common serious opportunistic infection among both adults and children in the United States. The incidence of PCP can be reduced substantially if persons at risk for PCP are identified and receive adequate chemoprophylaxis.
For both adults and children, oral trimethoprim-sulfamethoxazole (TMP-SMX) is the preferred form of prophylaxis. Adverse effects are commonly associated with the use of TMP-SMX and in some cases may require withdrawal of the drug until the effects resolve. However, re-introduction at the same dose or at a lower and gradually increasing dose will often permit the continued use of TMP-SMX. For persons intolerant to TMP-SMX, dapsone alone or dapsone plus pyrimethamine are effective alternatives. A second alternative is aerosol pentamidine. Additional drugs of unproven efficacy but of potential use in exceptional cases are available.
Although some evidence exists for airborne transmission of P. Carinii and some clusters of cases of PCP have been reported, data are insufficient to recommend separating persons with PCP from immunosuppressed persons as a standard practice.
Abstract:
The complexity of the U.S. health care system has become an issue in the debate over health care reform. In recent years, researchers have published studies examining whether the adoption of a Canadian-style, single-payer system in the United States would substantially reduce the administrative expenses. At the heart of these studies are international comparisons of administrative spending.
This background paper examines what is known about administrative costs in the health care systems of the United States and several other countries. In addition to exploring the types of activities that constitute health care administration, it reviews studies that measure and compare these activities in different countries, and it explores the potential usefulness of such comparisons. Although a Canadian-style system in the United States might indeed result in significant administrative savings, international comparisons of administration in countries other than Canada may also be helpful under a multiple-payer system by identifying how to achieve more modest savings or efficiencies in the way we administer our health care system.
The background paper is part of a larger project, International Differences in Health Care Technology and Costs. One other background paper, International Health Statistics: What the Numbers Mean for the United States, was published in November 1993. The remaining background papers in the series will examine international differences in spending for physician and hospital services, and health care technology and its assessment in eight countries. The House Committee on Ways and Means, under Chairman Dan Rostenkowski, asked OTA to undertake this assessment.
Preparation of this background paper was greatly assisted by an advisory panel, chaired by Rosemary Stevens of the University of Pennsylvania. In addition, many other individuals provided information and reviewed drafts of the paper. OTA gratefully acknowledges the contribution of each of these individuals. As with all OTA documents, the final responsibility for the content of the assessment rests with OTA.
ROGER C. HEADMAN
Director
Abstract:
The ultimate goals of HIV care and research are to prevent the spread of infection and to improve the health of infected people. The current goals of treatment are to prolong survival and optimize the quality of life. For planners and policy makers, providing services in a cost-effective manner is an increasingly important goal. To achieve all of these goals, we need to define and measure quality of life.
Quality of life measures can contribute to evaluation of interventions, assessment of individual needs, and weighing of policy options. HIV disease diminishes the quality of life of infected people, while treatments for HIV can have both beneficial and adverse effects. Quality of life measures can improve the sensitivity of clinical trials, express the net impact in understandable terms, and lead to more comprehensive assessments. Since it is possible to extend survival but diminish quality of life, individual decision-making should include the person's preferences about the balance between quantity and quality of life. In policy analysis, quality of life can help to define effectiveness and cost-effectiveness.
This paper begins by examining the definition and determinants of quality of life. Next, the paper describes quality of life measurement strategies in HIV-related research. Work in the development and application of quality of life measures is summarized with an emphasis on recent findings and debate. Finally, the paper outlines some of the frontiers in quality f life research methods.