Circumstances at HIV diagnosis and progression of disease in older HIV-infected Americans.

OBJECTIVES: This study identified age-related differences in diagnosis and progression of HIV by analyzing a nationally representative sample of HIV-infected adults under care in the United States. METHODS: We compared older (> or = 50 years) and younger participants stratified by race/ethnicity. Regression models controlled for demographic, therapeutic, and clinical factors. RESULTS: Older non-Whites more often had HIV diagnosed when they were ill. Older and younger patients were clinically similar. At baseline, however, older non-Whites had fewer symptoms and were less likely to have AIDS, whereas at follow-up they had a trend toward lower survival. CONCLUSIONS: Later HIV diagnosis in non-Whites merits public health attention; clinical progression in this group requires further study.

The impact of state policy on the costs of HIV infection.

There is substantial variation in the generosity of public assistance programs that affect HIV+ patients, and these differences should affect the economic outcomes associated with HIV infection. This article uses data from a nationally representative sample of HIV+ patients to assess how differences across states in Medicaid and AIDS Drug Assistance Programs (ADAP) affect costs and labor market outcomes for HIV+ patients in care in that state. Making ADAP programs more generous in terms of drug coverage would reduce per patient total monthly costs, mainly through a reduction in hospitalization costs. In contrast, expanding ADAP eligibility by increasing the income threshold would increase the total cost of care. Expanding eligibility for Medicaid through the medically needy program would increase per patient total costs, but full-time employment would increase and so would monthly earnings. The authors conclude that more generous state policies toward HIV+ patients--especially those designed to provide access to efficacious treatment--could improve the economic outcomes associated with HIV.

Expenditures for the care of HIV-infected patients in the era of highly active antiretroviral therapy.

BACKGROUND: The introduction of expensive but very effective antiviral medications has led to questions about the effects on the total use of resources for the care of patients with human immunodeficiency virus (HIV) infection. We examined expenditures for the care of HIV-infected patients since the introduction of highly active antiretroviral therapy. METHODS: We interviewed a random sample of 2864 patients who were representative of all American adults receiving care for HIV infection in early 1996, and followed them for up to 36 months. We estimated the average expenditure per patient per month on the basis of self-reported information about care received. RESULTS: The mean expenditure was $1,792 per patient per month at base line, but it declined to $1,359 for survivors in 1997, since the increases in pharmaceutical expenditures were smaller than the reductions in hospital costs. Use of highly active antiretroviral therapy was independently associated with a reduction in expenditures. After adjustments for the interview date, clinical status, and deaths, the estimated annual expenditure declined from $20,300 per patient in 1996 to $18,300 in 1998. Expenditures among subgroups of patients varied by a factor of as much as three. Pharmaceutical costs were lowest and hospital costs highest among underserved groups, including blacks, women, and patients without private insurance. CONCLUSIONS: The total cost of care for adults with HIV infection has declined since the introduction of highly active antiretroviral therapy. Expenditures have increased for medications but have declined for other services. However, there are large variations in expenditures across subgroups of patients.

Use of unpaid and paid home care services among people with HIV infection in the USA.

This paper examines utilization of paid and unpaid home health care using data from a nationally representative sample of HIV-positive persons receiving medical care in early 1996 (N = 2,864). Overall, 21.0% used any home care, 12.2% used paid care and 13.6% used unpaid care. Most (70.0%) users of home care received care from only one type of provider. Substantially more hours of unpaid than paid care were used. We also found evidence of a strong association between type of service used and type of care provider: 62.4% of persons who used nursing services only received paid care only; conversely, 55.5% of persons who used personal care services only received care only from unpaid caregivers. Use of home care overall was concentrated among persons with AIDS: 39.5% of persons with AIDS received any home health care, compared to 9.5% of those at earlier disease stages. In addition to having an AIDS diagnosis, logistic regression analyses indicated that other need variables significantly increased utilization; a higher number of HIV-related symptoms, lower physical functioning, less energy, a diagnosis of CMV and a recent hospitalization each independently increased the odds of overall home care utilization. Sociodemographic variables had generally weak relationships with overall home care utilization. Among users of home care, non-need variables had more influence on use of paid than unpaid care. Both paid and unpaid home health care is a key component of community-based systems of care for people with HIV infection. The results presented in this paper are the first nationally representative estimates of home care utilization by persons with HIV/AIDS and are discussed with reference to policy and future research.

National probability samples in studies of low-prevalence diseases. Part I: Perspectives and lessons from the HIV cost and services utilization study.

OBJECTIVE: To examine the trade-offs inherent in selecting a sample design for a national study of care for an uncommon disease, and the adaptations, opportunities and costs associated with the choice of national probability sampling in a study of HIV/AIDS. SETTING: A consortium of public and private funders, research organizations, community advocates, and local providers assembled to design and execute the study. DESIGN: Data collected by providers or collected for administrative purposes are limited by selectivity and concerns about validity. In studies based on convenience sampling, generalizability is uncertain. Multistage probability sampling through households may not produce sufficient cases of diseases that are not highly prevalent. In such cases, an attractive alternative design is multistage probability sampling through sites of care, in which all persons in the reference population have some chance of random selection through their medical providers, and in which included subjects are selected with known probability. DATA COLLECTION AND PRINCIPAL FINDINGS: Multistage national probability sampling through providers supplies uniquely valuable information, but will not represent populations not receiving medical care and may not provide sufficient cases in subpopulations of interest. Factors contributing to the substantial cost of such a design include the need to develop a sampling frame, the problems associated with recruitment of providers and subjects through medical providers, the need for buy-in from persons affected by the disease and their medical practitioners, as well as the need for a high participation rate. Broad representation from the national community of scholars with relevant expertise is desirable. Special problems are associated with organization of the research effort, with instrument development, and with data analysis and dissemination in such a consortium. CONCLUSIONS: Multistage probability sampling through providers can provide unbiased, nationally representative data on persons receiving regular medical care for uncommon diseases and can improve our ability to accurately study care and its outcomes for diseases such as HIV/AIDS. However, substantial costs and special circumstances are associated with the implementation of such efforts.

The care of HIV-infected adults in the United States. HIV Cost and Services Utilization Study Consortium.

BACKGROUND AND METHODS: In order to elucidate the medical care of patients with human immunodeficiency virus (HIV) infection in the United States, we randomly sampled HIV-infected adults receiving medical care in the contiguous United States at a facility other than military, prison, or emergency department facility during the first two months of 1996. We interviewed 76 percent of 4042 patients selected from among the patients receiving care from 145 providers in 28 metropolitan areas and 51 providers in 25 rural areas. RESULTS: During the first two months of 1996, an estimated 231,400 HIV-infected adults (95 percent confidence interval, 162,800 to 300,000) received care. Fifty-nine percent had the acquired immunodeficiency syndrome according to the case definition of the Centers for Disease Control and Prevention, and 91 percent had CD4+ cell counts of less than 500 per cubic millimeter. Eleven percent were 50 years of age or older, 23 percent were women, 33 percent were black, and 49 percent were men who had had sex with men. Forty-six percent had incomes of less than $10,000 per year, 68 percent had public health insurance or no insurance, and 30 percent received care at teaching institutions. The estimated annual direct expenditures for the care of the patients seen during the first two months of 1996 were $5.1 billion; the expenditures for the estimated 335,000 HIV-infected adults seen at least as often as every six months were $6.7 billion, which is about $20,000 per patient per year. CONCLUSIONS: In this national survey we found that most HIV-infected adults who were receiving medical care had advanced disease. The patient population was disproportionately male, black, and poor. Many Americans with diagnosed or undiagnosed HIV infection are not receiving medical care at least as often as every six months. The total cost of medical care for HIV-infected Americans accounts for less than 1 percent of all direct personal health expenditures in the United States.