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