Barbara J. Turner

The Impact of Competing Subsistence Needs and Barriers on Access to Medical Care for Persons with Human Immunodeficiency Virus Receiving Care in the United States

OBJECTIVESnTo examine whether competing subsistence needs and other barriers are associated with poorer access to medical care among persons infected with human immunodeficiency virus (HIV), using self-reported data.nnnDESIGNnSurvey of a nationally representative sample of 2,864 adults receiving HIV care.nnnMAIN INDEPENDENT VARIABLESnGoing without care because of needing the money for food, clothing, or housing; postponing care because of not having transportation; not being able to get out of work; and being too sick.nnnMAIN OUTCOME MEASURESnHaving fewer than three physician visits in the previous 6 months, visiting an emergency room without being hospitalized; never receiving antiretroviral agents, no prophylaxis for Pneumocystis carinii pneumonia in the previous 6 months for persons at risk, and low overall reported access on a six-item scale.nnnRESULTSnMore than one third of persons (representing >83,000 persons nationally) went without or postponed care for one of the four reasons we studied. In multiple logistic regression analysis, having any one or more of the four competing needs independent variables was associated with significantly greater odds of visiting an emergency room without hospitalization, never receiving antiretroviral agents, and having low overall reported access.nnnCONCLUSIONSnCompeting subsistence needs and other barriers are prevalent among persons receiving care for HIV in the United States, and they act as potent constraints to the receipt of needed medical care. For persons infected with HIV to benefit more fully from recent advances in medical therapy, policy makers may need to address nonmedical needs such as food, clothing, and housing as well as transportation, home care, and employment support.

Violence victimization after HIV infection in a US probability sample of adult patients in primary care.

OBJECTIVESnThis study estimated the proportion of HIV-infected adults who have been assaulted by a partner or someone important to them since their HIV diagnosis and the extent to which they reported HIV-seropositive status as a cause of the violence.nnnMETHODSnStudy participants were from a nationally representative probability sample of 2864 HIV-infected adults who were receiving medical care and were enrolled in the HIV Costs and Service Utilization Study. All interviews (91% in person, 9% by telephone) were conducted with computer-assisted personal interviewing instruments. Interviews began in January 1996 and ended 15 months later.nnnRESULTSnOverall, 20.5% of the women, 11.5% of the men who reported having sex with men, and 7.5% of the heterosexual men reported physical harm since diagnosis, of whom nearly half reported HIV-seropositive status as a cause of violent episodes.nnnCONCLUSIONSnHIV-related care is an appropriate setting for routine assessment of violence. Programs to cross-train staff in antiviolence agencies and HIV care facilities need to be developed for men and women with HIV infection.

A controlled trial to improve delivery of preventive care - Physician or patient reminders?

Objective:To improve the delivery of preventive care in a medical clinic, a controlled trial was conducted of two interventions that were expected to influence delivery of preventive services differently, depending on level of initiative required of the physician or patient to complete a service.Design:A prospective, controlled trial of five-months’ duration.Setting:A university hospital-based, general medical clinic.Participants:Thirty-nine junior and senior medical residents who saw patients in stable clinic teams throughout the study.Intervention:A computerized reminder system for physicians and a patient questionnaire and educational handout on preventive care.Measurements and main results:Delivery of five of six audited preventive services improved significantly after the interventions were introduced. The computerized reminder alone increased completion rates of services that relied primarily on physician initiative; the questionnaire alone increased completion rate of the service that depended more on patient compliance as well as on some physician-dependent services. Both interventions used together were slightly less effective in improving performance of physician-dependent services than the computerized reminder used alone.Conclusions:These interventions can improve the delivery of preventive care but they differ in their impacts on physician and patient behaviors. Overall, the computer reminder was the more effective intervention.

The relationship of clinic experience with advanced HIV and survival of women with AIDS

Objective:Hospital and physician experience have been linked to improved outcomes for persons with HIV. Because many HIV-infected patients receive care in clinics, we studied clinic HIV experience and survival for women with AIDS. Design:Retrospective cohort study of women with AIDS whose dominant sources of care were clinics. Clinic HIV experience was estimated as the cumulative number of Medicaid enrollees with advanced HIV who used a particular clinic as their dominant provider up to the year of the patients AIDS diagnosis: low experience (< 20 patients), medium (20–99 patients), high (≥ 100 patients). Proportional hazards models examined relationships between experience and survival. Setting:A total of 117 New York State clinics. Patients:A total of 887 New York State Medicaid-enrolled women diagnosed with AIDS in 1989–1992. Main outcome measure:Survival after AIDS diagnosis. Results:In later study years (1991–1992), patients in high experience clinics had an approximately 50% reduction in the relative hazard of death (0.53; 95% confidence interval, 0.35–0.82) compared with patients in low experience clinics. Adjusting for demographic and clinical variables, 71% of patients in high experience clinics were alive 21 months after diagnosis compared with 53% in low experience clinics. Experience and survival were not significantly associated in the early study years (1989–1990). Conclusions:In more recent years, women with AIDS receiving care in high experience clinics survived longer after AIDS diagnosis than those in low experience clinics, providing further evidence of a relationship between provider HIV experience and outcomes.

AIDS SPECIALIST VERSUS GENERALIST AMBULATORY CARE FOR ADVANCED HIV INFECTION AND IMPACT ON HOSPITAL USE

We examined patterns of ambulatory care in the year before diagnosis of acquired immune deficiency syndrome (AIDS) for 5,720 persons infected with human immunodeficiency virus (HIV) who were continuously enrolled in the New York State Medicaid program and diagnosed in 1984–90. For 3,175 persons followed ≥ 6 months after AIDS, we also examined the change between the year before AIDS diagnosis and the 6 months afterward in the predominant provider who was seen most frequently and at least twice. Approximately 75% of the population had a predominant provider identified. Of this group, 43% of the patients had a generalist as their predominant provider before AIDS diagnosis, falling to only 25% after diagnosis. The proportion with an AIDS specialist predominant provider increased from 22% before AIDS diagnosis to 39% afterward (P < 0.001). Patients with a generalist predominant provider before AIDS diagnosis had higher odds of switching providers and of hospitalization after AIDS diagnosis than patients with an AIDS specialist predominant provider. If generalists are to be encouraged to manage patients with advanced HIV disease, a better understanding of factors contributing to these outcomes is needed.

Optimizing Care for Persons with HIV Infection

A decade ago, some argued that HIV disease was rapidly becoming a primary care disease and that providing good access to high-quality HIV care required training primary care physicians in a wide range of HIV management issues (1, 2). According to this view, HIV was a common, chronic disease that, like hypertension and diabetes, would be managed in various primary care settings. It was also stated that certain basic HIV-related skills belonged in the repertoire of most primary care physicians. Dramatic treatment advances have raised new concerns about how to optimize care for HIV-infected patients. The complexity of medical management of HIV has grown along with the efficacy of treatment. In 1990, zidovudine was the only approved antiretroviral agent. Today, 14 drugs are approved for treatment of HIV, and more are on the way. Combination treatment has become the standard of care. Criteria for when to start treatment, which drugs to use, and how to manage patients whose current drug regimens fail to control HIV viremia are controversial and change frequently (3, 4). Given these advances, how can we optimize care for HIV infection? We address the following questions: 1) What is the role of experience and expertise in optimizing outcomes in patients with HIV infection? 2) What is the role of primary care skills and organization in high-quality HIV care? 3) How good are primary care physicians basic HIV knowledge and skills in screening and prevention? These issues have important implications. For practitioners, they define whether one is an appropriate HIV care provider and what HIV-related problems one should be prepared to confront. For HIV-infected patients, they influence where one should receive HIV-related care. For managed care organizations, they guide who should be designated to care for HIV-infected patients. For medical educators, they define the curriculum on HIV care for specific types of providers. For policymakers, they affect where resources for HIV care should be channeled. We address these issues about optimizing HIV care through review of current evidence from the medical literature. Methods A MEDLINE search of the literature from 1982 to 1998 was performed by using the terms HIV or AIDS and the keywords quality of care, accessibility, coordination, comprehensiveness, and primary care. We also searched by using the terms HIV or AIDS and the Medical Subject Headings quality of health care, primary health care, health services accessibility, continuity of patient care, comprehensive health care, and outcome assessment. Articles from the authors files and references of retrieved articles were reviewed. Experience, Expertise, and Outcomes What type of training and experience in HIV management is likely to lead to the best patient outcomes? Is HIV management optimized by using specialists? Although some issues are specific to HIV management, we first review information in other diseases that may have important parallels. Several recent studies of other conditions have compared the quality of care delivered by specialists and generalists, and comprehensive reviews have been published (5, 6). These studies used diverse observational designs that make valid comparisons among them difficult; methodologic standards for such comparisons have been proposed (5). Nonetheless, several broad themes emerge. In surveys of physician knowledge, specialists are usually more knowledgeable than generalists about diagnostic techniques (7, 8) and efficacious therapies (9-13). When processes of care are examined by using chart review or patient reports, specialists tended to have higher rates of appropriate care than generalists for acute myocardial infarction (9, 14), unstable angina (15), asthma (16), acute arthritis (17, 18), and depression (19). The results of studies that assess outcomes have been more mixed. In the Medical Outcomes Study (20), a diverse population of patients with hypertension and diabetes were followed for 4 years with clinical assessment and for 7 years for survival. Clinical and health-related quality-of-life outcomes were no better for specialists than for generalists. In a large study of care for patients with acute low back pain (21), outcomes were no better for orthopedists and chiropractors than for generalists, and the care given by generalists was less expensive. In contrast, a study of elderly patients hospitalized for acute myocardial infarction in four U.S. states showed that patients for whom the admitting physician was a cardiologist had 12% lower 1-year mortality rates (14). In a national sample of Medicare patients admitted for stroke, patients for whom the admitting physician was a neurologist had significantly lower 90-day mortality rates (22). The lack of consistent differences in outcomes between specialist and generalist care in these studies may be explained by differences in the diseases that have been examined. Conditions that are common in general practice and for which treatments are not rapidly evolving, such as low back pain, may be less likely to generate differences in outcomes between specialists and generalists. Studies in which specialty care was associated with better outcomes (for example, acute myocardial infarction and stroke) assess conditions that may be encountered less frequently in general practice and for which therapies are rapidly evolving. Because HIV disease has both of these characteristics, it may be similar to diseases in which specialty care has been associated with better outcomes. Defining specialist care for HIV is challenging. Unlike such diseases as acute myocardial infarction and stroke, HIV infection is a multisystem disease involving diagnoses and treatments that cross the traditional subspecialist boundaries of infectious diseases, hematology/oncology, dermatology, pulmonology, gastroenterology, neurology, psychiatry, and ophthalmology. A multidisciplinary approach for HIV care is therefore required. In this context, the most appropriate definition of an HIV specialist may consist of a physician with a certain level of experience in HIV management and HIV expertise, as measured by knowledge of specific HIV management issues. In HIV management, strong evidence indicates that greater experience is associated with better patient outcomes. The first studies linking experience to patient outcomes were focused on inpatient mortality. Bennett and colleagues (23, 24) found that mortality rates for Pneumocystis carinii pneumonia, one of the most common opportunistic infections in HIV disease, were 12% in hospitals with a high level of AIDS experience compared with 33% in those with less experience (23, 24). Studies of in-hospital mortality for all AIDS-related diagnoses yielded similar results. In their 1987 study of 40 Massachusetts hospitals, Stone and associates (25) found that the adjusted relative risk for death in hospitals with low HIV experience was 2.9 times higher than in those with high experience. Turner and Ball (26) had similar results in a national study of more than 10 000 AIDS-related hospitalizations. Other studies have linked the experience of ambulatory care providers with patient outcomes. Kitahata and colleagues (27) examined survival among patients with AIDS in one health maintenance organization and found that patients of physicians who had cared for at least five patients with AIDS had better survival than patients of physicians with less experience. Laine and coworkers (28) showed that HIV-infected women followed by clinics with greater experience also have significantly better survival. These studies were performed before the current combination antiretroviral regimens were developed. Although more recent data are not available, treatment advances have probably increased the importance of provider experience. Effective use of current regimens can result in more substantial improvement in survival than was possible with past regimens (29, 30), but the misuse of current regimens can lead to drug resistance that permanently impairs the virologic effectiveness of treatment (3). If provider experience is important for high-quality HIV care, how much experience is needed? The cut-off that Kitahata and colleagues (27) used to distinguish providers with differences in survival for 1984 to 1994 was only five patients. However, this was before the introduction of highly active combination antiretroviral treatment, and it seems very likely that more experience with HIV care is desirable at this time. Additional research is needed to identify the point beyond which more experience provides little additional improvement in patient outcomes. An important limitation of Kitahata and colleagues study and other studies of experience and outcomes in HIV disease is that they have not directly measured the expertise or knowledge base of providers. Caring for a large number of patients with HIV infection may not lead to good patient outcomes if a provider does not take other steps, such as keeping up with advances in HIV therapies. Providers who do not care for large numbers of HIV-infected patients but have strong knowledge of HIV management issues may still provide high-quality care. Further research is needed on the relation between expertise and outcomes. Assessment of knowledge of HIV management, not simply provider experience, may also be important in developing criteria for designating who should care for patients with HIV infection. Experience and expertise in HIV care are often confused with subspecialty training. Kitahata and colleagues study (27) has been interpreted as evidence that physicians with infectious disease training provide better-quality HIV care than generalists do. However, almost all of the physicians in Kitahata and colleagues study were family practitioners rather than subspecialists. Studies that examine the specialty of the usual HIV care provider have produced conflicting evidence about the performance of g

A severity classification system for AIDS hospitalizations.

The authors describe a new model for classifying hospitalized patients with acquired immunodeficiency syndrome (AIDS) according to their severity of illness. In the first phase of the project, a clinical model indicating the relative severity of AIDS complications was formulated, based on the clinical literature and expert opinion. In the second phase, the model was tested empirically using data on in-patient mortality of over 6,000 adult AIDS hospitalizations in New York State during 1985. The ordering of AIDS-related complications in the clinical model was revised to reflect a continuum of increasing likelihood of death in the hospital. The final classification system for AIDS hospitalizations has 20 substages, grouped into three stages, with in-patient, mortality rates increasing from 6% to 60%. The system is automated and can be applied to different AIDS populations to analyze resource use and outcomes of hospital care.

Other Cancers in Uveal Melanoma Patients and Their Families

To determine associations with other cancers, 400 consecutive uveal melanoma patients examined at Wills Eye Hospital between 1984 and 1985 were surveyed regarding personal and family history of cancer. Responses were received from 333 (83%). Sixty patients reported 43 nonbasal cell second primary cancers, which were confirmed pathologically or by physician records. The overall prevalence of nonbasal cell cancers diagnosed in uveal melanoma patients by December 1985 was over two times greater than the expected prevalence, based on the Connecticut Tumor Registry data for an age- and sex-matched population. Gynecologic cancers tended to be more common in uveal melanoma female patients than in the comparison population. Although the observed prevalence of cutaneous melanoma was not significantly greater than expected, three cases with both primary cutaneous and uveal melanoma were reported. Family histories of cutaneous melanoma were confirmed in 14 patients, and uveal melanoma in two patients. Data suggested that the overall cancer prevalence in uveal melanoma patients may be increased, that hormonal factors may play a role in the genesis of this malignancy, and that there may be a link between cutaneous and uveal melanoma.

A continuum of care for the inner city:assessment of its benefits for Boston's elderly and high-risk populations.

We describe an approach to health care in the inner city: a multidisciplinary system of physicians and mid-level practitioners that provides individualized care to chronically ill, elderly, homebound, and nursing-home residents of urban Boston who would otherwise be forced into an inappropriate reliance on teaching hospitals. Linked to four neighborhood health centers, three home-care programs, and a teaching hospital, and financially self-supporting except for the home-care component, the system cared for 3000 ambulatory, 280 homebound, and 358 nursing-home patients in the representative year described. In-hospital use, particularly hospital days, was reduced when judged by existing data for comparable (though not identical) populations. Based on stable physician practices, the system offers a workable approach to the related problems of care, manpower, and cost in the urban core.

The role of functional status in predicting inpatient mortality with AIDS: A comparison with current predictors

To assess the independent prognostic role of functional status, as reflected by a measure of an inpatients global requirement for nursing assistance with basic activities of daily living (Global ADL), we compared Global ADL with three validated AIDS mortality predictors: the Clinical AIDS Prognostic Staging (CAPS); the Severity Classification System for AIDS Hospitalization--version 2 (SCAH-2); and CD4 cell count. Our study sample consisted of 1392 patients with AIDS and a hospital stay of 3 or more days at one of 20 hospitals in 11 U.S. cities with high AIDS incidence. Data were collected from September 1990 through December 1991. Two percent of patients refused participation, and 26% were eliminated due to incomplete data collection, leaving an analytic sample of 1003 patients. Only 30% of patients had a CD4 count measured at any time during hospitalization. Cox regression was used to measure the hazard of inpatient mortality adjusted for length of stay. Overall mortality was 12%. Mortality rates for patients in Global ADL stages I-IV were 3%, 8%, 19%, and 51%, respectively (p < 0.0001). Global ADL more effectively discriminated mortality than CAPS (p < 0.001), SCAH-2 (p < 0.001), or CD4 count (p < 0.001). Global ADL also added independent information in analyses adjusted for both CAPS and SCAH-2: a single stage increase of Global ADL demonstrated a 1.9-fold increased hazard of death (CI: 1.6, 2.3). SCAH-2, assigned at discharge, was not strongly correlated with admission predictors (Global ADL: r = 0.17; CI: 0.11, 0.23 or CAPS: r = 0.03, CI: 0.02, 0.17). We conclude that Global ADL, alone or in tandem with other severity systems, provides an excellent severity adjustment for inpatient mortality with AIDS. Finally, CD4 cell counts were not routinely available and were not as predictive as Global ADL in the patients for whom both were available.