An Inventory Of Federally Sponsored HIV And HIV-Relevant Databases. Database: HIV Cost and Services Utilization Study (HCSUS)


Purpose Of The Database And Study Design: HCSUS is designed to be a national sample representative of the adult US population infected with HIV. HCSUS uses a multistage national probability sampling frame to select the study cohort. To participate in the study, individuals must have been at least 18 years of age with known HIV infection. They must have made at least one visit for regular care in the contiguous US to other than a military, prison, or emergency department facility between January 5 and February 29, 1996 (except for one city where sampling began and ended two months later). In Stage 1 of the sample, 28 metropolitan statistical areas and 24 clusters of rural counties that together contained about 70 percent of all AIDS cases in the US were randomly selected. In Stage 2, 58 institutional or individual physicians known to care for HIV positive patients in urban areas and 28 in rural areas were randomly selected. Using data from the American Medical Association (AMA) Master File, about 4,000 physicians were randomly sampled in relevant specialties among whom 87 urban physicians and 23 rural physicians confirmed that they cared for eligible patients. In Stage 3, sampling rates were set to equalize probabilities within subgroups while increasing the over-sample rate for women and members of private staff-model health maintenance organizations (HMOs). Subjects were randomly selected with the appropriate predetermined probability from anonymous lists of those individuals receiving outpatient or inpatient care from participating providers during January and February 1996. Participation agreements were obtained from selected providers.

Nature Of The Data Collected: Longitudinal nationally representative sample that records clinical, laboratory specimen, and interview data (with clinical and laboratory specimen data abstracted from medical records); some information from pharmacy records and bill records were obtained for a subsample of cohort members; blood samples were obtained from approximately 2000 respondents in 1998 (blood samples themselves not available for analysis but a data file containing CD4 and viral load data will be available in 2000).

Unit Of Analysis: HIV positive adults in care.

Data Collection Methods: Three rounds of interviews were conducted: baseline, first follow-up, and second follow-up. Respondents were interviewed using 90 minute long forms. The baseline sample consisted of 2,864 long-form respondents interviewed between January 1996 and April 1997. The first follow-up sample included 2,466 respondents interviewed between December 1996 and July 1997. The second follow-up sample consisted of 2,267 respondents interviewed between August 1997 and January 1998. Short or proxy forms were administered if the respondent was too ill to participate in the long-form interviews or otherwise unavailable for interview. The medical records of the respondents were reviewed at their primary site of ambulatory care.

Major Data Constructs And Key Data Elements: Major constructs included in the interview forms include: usual source of care, HIV tests and clinical stage, symptoms, insurance coverage, utilization of care (i.e., inpatient, outpatient visits, emergency department visits, mental health use, home health care, dental services, medication), residential status, health-related quality of life measures, social support and coping (including satisfaction with care), unmet needs for medical and non-medical care, mental health screening, illicit drug use, sociodemographic characteristics, region, knowledge about AIDS and HIV, and preferences regarding care (e.g., advance medical directives).

Strengths And Weaknesses Of The Study Design And Database: Strengths include: HCSUS is a probability sample that enables generalization to the overall HIV population; rate of attrition in sample is low over time. Weaknesses include: cohort represents those receiving care in 1996; the population of persons in care for HIV may have changed since the introduction of HAART.

Gaps In The Data Collected And Factors Leading To The Gaps: Unavailable

Feasibility Of Linking With Other Databases: Minimal; names are strictly confidential and no identifying information is available.

Process To Access The Database And Contact Person: Procedures for accessing public use data files are under development, were completed on April 15, 2000. For information, contact John Fleishman, PhD, AHRQ at (301) 594-2007.

Selected Citations:

Shapiro MF, Berk ML, Berry SH, et al. National probability samples in studies of low-prevalence diseases, part 1: Perspectives and lessons learned from the HIV cost and services utilization study. Health Services Res. 34(5): 951-968, 1999.

Frankel MR, Shapiro MF, Duan N, et al. National probability samples of low-prevalence diseases, part 2: Designing and implementing the HIV cost and services utilization study sample. Health Services Res. 34(5): 969-992, 1999.

Cunningham WE, Anderson RM, Katz MH, et al. The impact of competing subsistence needs and barriers on access to medical care for persons with Human Immunodeficiency Virus receiving care in the United States. Medical Care. 37:1270-1281, 1999.

Shapiro MF, Morton SC, McCaffrey DM, et al. Variations in the care of HIV positive adults in the United States. JAMA. 281:2305-2315, 1999.

Bozzette SA, Berry SA, Duan N, et al. The care of HIV positive adults in the United States. NEJM. 339:1897-1904, 1998.

Berry SH, Brown JA, Athey L, et al. HCSUS Baseline Patient Questionnaire Documentation. Santa Monica: RAND, MR-1090-AHCPR, 1998.

McCutchan A, Bozzette S, Shapiro M, Turner B, et al. Lifetime prevalence of opportunistic infections in a nationally representative sample (HCSUS) of HIV positive persons in care. International Conference on AIDS. 12: 133 (Abstract No. 13238), 1998.

Bozzette S, Berry SH, Duan N, Frankel MR, et al. Characteristics of HIV positive patients receiving regular care in the US: results from the HIV Cost and Services Utilization Study (HCSUS). International Conference on AIDS. 12: 131 (Abstract No. 13229), 1998.

Asch S, McCutchan JA, Bozzette S, Shapiro M, et al. Underuse of primary prophylaxis for Mycobacterium avium complex (MAC) in a representative sample of HIV positive patients in care in the USA: who is missing out? International Conference on AIDS. 12: 295 (Abstract No. 22167), 1998.

Duan N, McCaffrey DR, Frankel MR, et al. HCSUS Baseline Methods Technical Report. Santa Monica: RAND, MR-1060-AHCPR, 1998.

Knouse DE, Collins RL, Senterfitt JW, Mathews WC, et al. Attitudes of HIV positive persons toward taking antiretroviral therapies: a matter of trust? International Conference on AIDS. 11(2): (Abstract No. Th.D.5123), 1996.

Lam NS, Liu KB. Use of space-filling curves in generating a national rural sampling frame for HIV/AIDS research. Professional Geographer. 48(3): 321-332, 1996.

Collins RK, Kanouse DE, Senterfitt JW, McCutchan AJ, et al. Use of alternative treatments for HIV: patterns and correlates. International Conference on AIDS. 11(1): (Abstract No. Mo.B.183), 1996.