variables changed over the course of the illness (Berk et al., 1993; Fleishman et al., 1994).

The study collected data on 2,090 HIV-infected adults and children receiving clinical HIV care from spring 1991 through fall 1992. Participants (or their proxies) were interviewed in person quarterly for a total of six interviews (Berk et al., 1993; Hsia et al., 1995). Interview data were supplemented by medical, service utilization, billing, and other data obtained from the providers of inpatient, ambulatory, and home health care, as well as pharmacy data and Medicaid, and Health Care Financing Administration claims records (Berk et al., 1993). Data also were collected from nonmedical providers, including community-based organizations that offer supportive services, podiatrists, and alternative therapy providers.15

Interview data were gathered on participants’ age, sex, race and ethnicity, educational level, employment history, income sources, insurance type, stage of illness, route of exposure, and clinical trials participation. Information also was collected on participant’s living arrangements and social support network; experience of barriers to the receipt of services; functional status; and psychological affect and experience of pain (Berk et al., 1993; Hsia et al., 1995; Niemcryk et al., 1998). During each interview, participants were asked to give a full accounting of all providers from whom they had received services since the previous interview. With permission, those providers were contacted to obtain clinical and laboratory data, as well as data on service utilization, charges, and source of payment (Berk et al., 1993). Such data were collected on hospital admissions, emergency department use, outpatient services, drug and alcohol treatment, dental treatment, and counseling or support group services (Niemcryk et al., 1998), in addition to data on pharmacy and home health service utilization (Berk et al., 1993).

HIV Cost and Services Utilization Study

HCSUS (October 1994-September 2000) was the first major research effort to collect information on a nationally representative sample of adults receiving care for their HIV infection (AHRQ, 1998; RAND, 2011). Designed to collect and analyze data on medical and nonmedical cost and service utilization for adults with HIV, HCSUS was a cooperative effort conducted by a public-private consortium based out of the RAND Corporation and funded by a number of public agencies and private entities, through an agreement between AHRQ and RAND (RAND, 2011).

HCSUS was a prospective observational study that collected data


15Providers of dental services were not contacted directly due to concern about exposing patients’ HIV status.

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