Variations in the care of HIV-infected adults in the United States - Results from the HIV Cost and Services Utilization Study

Context Studies of selected populations suggest that not all persons infect ed with human immunodeficiency virus (HIV) receive adequate care. Objective To examine variations in the care received by a national sample r epresentative of the adult US population infected with HIV. Design Cohort study that consisted of 3 interviews from January 1996 to Jan uary 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 leas t 18 years old, with known HIV infection receiving medical care in the 48 c ontiguous United States in early 1996 in facilities other than emergency de partments, 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 th erapy 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 hospitali zation, 30% initially and 26% subsequently of those who had CD4 cell counts below 0.20 x 10(9)/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 10(9)/L did not receive antiretroviral therapy (protease inhibitor or nonnucleoside reverse transcriptase inhibitor). Inferior patterns of care were seen far many of these measures in blacks and Latinos compared with wh ites, the uninsured and Medicaid-insured compared with the privately insure d, 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 mu ltivariate adjustment, many differences remained statistically significant. Even by early 1998, fewer blacks, women, and uninsured and Medicaid-insure d persons had started taking antiretroviral medication (CD4 cell count adju sted P Values <.001 to <.005). Conclusions Access to care improved from 1996 to 1998 but remained suboptim al. Blacks, Latinos, women, the uninsured, and Medicaid-insured all had les s desirable patterns of care. Strategies to ensure optimal care for patient s with HIV requires identifying the causes of deficiency and addressing the se important shortcomings in care.