Context: Studies of selected populations suggest that not all persons infected with human immunodeficiency virus (HIV) receive adequate care. Objective: To examine variations in the care received by a national sample representative of the adult US population infected with HIV. Design: Cohort study that consisted of 3 interviews from January 1996 to January 1998 conducted by the HIV Cost and Services Utilization Consortium. Patients and Setting: Multistage probability sample of 2864 respondents (68% of those targeted for sampling), who represent the 231 400 persons at least 18 years old, with known HIV infection receiving medical care in the 48 contiguous United States in early 1996 in facilities other than emergency departments, the military, or prisons. The first follow-up consisted of 2466 respondents and the second had 2267 (65% of all surviving sampled subjects). Main Outcome Measures: Service utilization (<2 ambulatory visits, at least 1 emergency department visit that did not lead to hospitalization, at least 1 hospitalization) and medication utilization (receipt of antiretroviral therapy and prophylaxis against Pneumocystis carinii pneumonia). Results: Inadequate HIV care was commonly reported at the time of interviews conducted from early 1996 to early 1997 but declined to varying degrees by late 1997. Twenty-three percent of patients initially and 15% of patients subsequently had emergency department visits that did not lead to hospitalization, 30% initially and 26% subsequently of those who had CD4 cell counts below 0.20 x 109/L did not receive P carinii pneumonia prophylaxis, and 41% initially and 15% subsequently of those who had CD4 cell counts below 0.50 x 109/L did not receive antiretroviral therapy (protease inhibitor or nonnucleoside reverse transcriptase inhibitor). Inferior patterns of care were seen for many of these measures in blacks and Latinos compared with whites, the uninsured and Medicaid-insured compared with the privately insured, women compared with men, and other risk and/or exposure groups compared with men who had sex with men even after CD4 cell count adjustment. With multivariate adjustment, many differences remained statistically significant. Even by early 1998, fewer blacks, women, and uninsured and Medicaid-insured persons had started taking antiretroviral medication (CD4 cell count adjusted P values <.001 to <.005). Conclusions: Access to care improved from 1996 to 1998 but remained suboptimal. Blacks, Latinos, women, the uninsured, and Medicaid-insured all had less desirable patterns of care. Strategies to ensure optimal care for patients with HIV requires identifying the causes of deficiency and addressing these important shortcomings in care.
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