Purpose Of The Database And Study Design: The goals of ACSUS were to: (1) address the need for comprehensive data on the patterns of health care delivery to HIV positive people and (2) overcome the limitations of prior research by obtaining data on health services use and costs from a large heterogeneous sample in several US communities with substantial HIV prevalence. Westat, working under contract for AHRQ, began collecting data in March 1991. Data collection was completed in late 1992.
Nature Of The Data Collected: Longitudinal sample including up to six interviews per respondent. Medical and financial record data were also collected.
Unit Of Analysis: HIV positive adults and children
Data Collection Methods: Sample selection was undertaken in three stages: selection of geographic areas, selection of medical care providers within each area, and selection of patients within each provider. Following a brief recruitment period, on-site coordinators distributed a self-administered screening questionnaire to all patients using a specific clinical site at each provider (e.g., HIV clinic). Patients indicated on the questionnaire if they ever had received a positive HIV test, if they had experienced HIV-related symptoms in the past five years, or if they had been diagnoses with an AIDS-related condition in the past five years. Additional information regarding demographic characteristics and HIV exposure routes was collected. After the screening questionnaire was completed, the coordinator determined if the patient was eligible for participation in the study. Only HIV positive patients were recruited. The screening questionnaire was used to create three disease strata: asymptomatic, symptomatic non-AIDS, and AIDS. A systematic random sample was selected for each stratum, with oversampling of women and pediatric cases. After initial acceptance into the sample, the site coordinator requested the patient formally participate in the interview phase of the study. Health service utilization data were obtained for an 18-month period between March 1991 and August 1992. Respondents were interviewed six times during that period. Each interview requested information regarding service utilization events during the previous three-month period.
General Attributes: Almost 2,100 HIV positive respondents were recruited from 26 medical care providers in ten cities. Of these, 1,949 were adults (aged 13 year of age or older) and the remainder were children. However, very few adolescents who were 13 years of age or older were enrolled in the study.
Major Data Constructs And Key Data Elements: Self-reported data were collected regarding the number of inpatient admissions and length of stay for each admission; the number of ambulatory care visits to hospital clinics, other clinics, or private physicians’ office; use of other health care services; health history; health status; stage of HIV infection; medication use; employment history and income; services received from social service agencies; physical functioning; pain; mood; activities of daily living; living arrangements; access and barriers to care; demographic characteristics; insurance coverage; and out-of-pocket expenditures. Disease stage (i.e., asymptomatic, symptomatic, AIDS) was based on review of medical record data.
Strengths And Weaknesses Of The Study Design And Database: Selection of locations and providers was undertaken on a purposeful basis, resulting in a nonrandom sample of patients. Although the ACSUS data may present useful historical data, its results are unlikely to accurately predict current HIV cost and service utilization patterns.
Gaps In The Data Collected And Factors Leading To The Gaps: ACSUS does not describe current cost and service utilization patterns
Feasibility Of Linking With Other Databases: Linkage with other databases, including Medicaid claims and eligibility records, was undertaken to validate the self-reported data.
Process To Access The Database And Contact Person: Public use data for adults and (separately) for children are available through the National Technical Information Service (NTIS) for a fee. Contact John Fleishman, PhD, AHRQ, for details: (301) 594-2007.
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