| [Guide to Acronyms] | [Table of Contents] | [Centers for Disease Control and Prevention, Division of HIV/AIDS Prevention, Surveillance and Epidemiology] |
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.
Selected Citations:
Smith SR, Kirking DM. Access and use of medications in HIV disease. Health Services Research. 34(1): 123-144, 1999.
Joyce GF, Goldman DP, Leibowitz A, Carlisle D, et al. Variation in inpatient resource use in the treatment of HIV: do the privately insured receive more care? Medical Care. 37(3): 220-227, 1999.
Hsia DC. Medications used for pediatric HIV infection in the USA, 1991-1992. AIDS Care. 10(6): 761-770, 1998.
Niemcryk SJ, Bedros A, Marconi KM, O’Neill JF. Consistency in maintaining contact with HIV-related service providers: an analysis of the AIDS Cost and Service Utilization Survey (ACSUS). Journal of Community Health. 23:137-152, 1998.
Fleishman JA. Transitions in insurance and employment among people with HIV infection. Inquiry. 35: 36-48, 1998.
Fleishman JA. Functional status transitions and survival in HIV disease: evidence from the AIDS Costs and Service Utilization Survey. Medical Care. 36(4): 533-543, 1998.
Fleishman JA. Utilization of home care among people with HIV infection. Health Services Research. 35(1): 155-175, 1997.
Fleishman JA. Dental services use among adults with human immunodeficiency virus infection. Medical Care. 35(1): 77-85, 1997.
Schur CL, Berk ML. Health insurance coverage of persons with HIV-related illness: data from the ACSUS screener. Pediatric AIDS and HIV Infection. 5(6): 362-362, 1994.
Fahs MC, Waite D, Sesholtz M, Muller C. Results of the ACSUS for pediatric AIDS patients: utilization of services, functional status, and social severity. Health Services Research. 29(5): 549-567, 1994.
Fleishman JA, Hsia DC, Hellinger FJ. Correlates of medical service utilization among persons with HIV infection. Health Services Research. 29:527-548, 1994.
Hellinger FJ, Fleishman JA, Hsia DC. AIDS treatment costs during the last months of life: evidence from the ACSUS. Health Services Research. 29(5): 569-581, 1994.
Hellinger FJ. The use of health services by women with HIV infection. Health Services Research. 28(5): 543-561, 1993.
Purpose Of The Database And Study Design: HCUP-3 is a public-private partnership between the Federal and State governments and health care industry to produce health care data. The objectives of HCUP are to obtain data from statewide sources (principally State governments and hospital associations); design and develop a multi-state health care database for use in health services research and policy analysis; and release data to public and private users for a variety of purposes. HCUP-3 consists of two hospital inpatient databases: the HCUP-3 Nationwide Inpatient Sample (NIS) and the HCUP-3 State Inpatient Database (SID). These databases contain data elements that are similar to a typical discharge abstract.
Nature Of The Data Collected: Cross-sectional administrative and clinical records
Unit Of Analysis: Inpatient discharges
Data Collection Methods: The HCUP-3 NIS contains inpatient and hospital-based ambulatory surgery data from about 900 US hospitals, or about a 20 percent sample of hospitals. The NIS uses a stratified probability sample of hospitals, selected to be representative of US community hospitals as based on the American Hospital Association (AHA) Annual Survey. AHA defines community hospitals as non-Federal short-term general hospitals that are open to the public, as well as specialty hospitals. Short-term stays have an average length of less than 30 days. The AHA Annual Survey is used to stratify hospitals by several characteristics: ownership/control, bed size, teaching status, rural or urban location, and US region. Where possible, a 20 percent sample is drawn of each strata. The NIS contains records for all stays in the sampled hospitals. The sample was drawn from states including: Arizona, California, Colorado, Connecticut, Florida, Illinois, Iowa, Kansas, Maryland, Massachusetts, New Jersey, New York, Oregon, Pennsylvania, South Carolina, Washington, and Wisconsin. The NIS includes core inpatient data elements. The HCUP-3 SID contains 100 percent of hospitals and discharges from State government and private data agencies with statewide inpatient data systems. The SID includes common inpatient data elements. After conversion of the submitted data to AHRQ and processing to create a uniform format, the processed tape is returned to the data source. Dissemination of the SID is controlled by the original data source. The identity of individual patients and physicians is not included in the records to protect their confidentiality. These databases are supplemented with data from sources including the AHA Annual Survey of Hospitals, the Area Resource File maintained by HRSA’s Bureau of Health Professions, and Bureau of the Census.
General Attributes: HCUP-3 was initiated on an annual basis in 1988. HCUP-1 data collection occurred in 1970 through 1977. HCUP-2 data collection spanned 1980 through 1987.
Major Data Constructs And Key Data Elements: Patient demographic, geographic, and payer characteristics; principal and secondary diagnoses; principal and secondary procedures; length of stay; total charges; admission and discharge status; and hospital characteristics.
Strengths And Weaknesses Of The Study Design And Database: HCUP-3 databases are available through public use tapes. HCUP documentation states that since the data were originally gathered for administrative purposes, there may be reliability and validity problems with some data elements. Additional problems cited include missing data, under-reporting of socially stigmatizing conditions such as mental illness or drug use, and under-reporting of minor procedures.
Gaps In The Data Collected And Factors Leading To The Gaps: None identified
Feasibility Of Linking With Other Databases: Linkage to other databases is feasible.
Process To Access The Database And Contact Person: The Nationwide Inpatient Sample can be purchased from NTIS. A confidentiality agreement must be signed. General questions about the database can be addressed to hcup@ahrq.gov. Information is also available through the HCUP website at: http://www.ahrq.gov.
Selected Citations:
Bentham WD, Cai L, Schulman KA. Characteristics of hospitalizations of HIV positive patients: an analysis of data from the 1994 Healthcare Cost and Utilization Project. JAIDS. 22(5): 503-508, 1999.
Maynard C, Chapko MK, Every NR, Martin DC, Ritchie JL. Coronary angioplasty outcomes in the Healthcare Cost and Utilization Project. American Journal of Cardiology. 81: 848-852, 1998.
Elixhauser A, Steiner CA, Whittington CA, McCarthy E. Clinical Classifications for Health Policy Research, Hospital Inpatient Statistics, 1995. Rockville: Agency for Health Care Policy and Research. AHCPR Publication No. 98-0049, 1998.
Duffy SQ, Elixhauser A, Sommer JP. Diagnosis and Procedure Combinations in Hospital Inpatient Data. Rockville: Agency for Health Care Policy and Research. AHCPR Publication No. 96-0047, 1996.
Elixhauser A, McCarthy E. Clinical Classifications for Health Policy Research, Version 2: Hospital Inpatient Statistics. Rockville: Agency for Health Care Policy and Research. AHCPR Publication No. 96-0017, 1996.
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.
| [Guide to Acronyms] | [Table of Contents] | [Centers for Disease Control and Prevention, Division of HIV/AIDS Prevention, Surveillance and Epidemiology] |