HIV Cost and Services Utilization Study

As HIV/AIDS spreads into different communities and as new therapies become available, policymakers require reliable information about the type and costs of the health care services that persons with HIV disease are receiving, so that informed resource-allocation decisions can be made. The HIV Cost and Services Utilization Study (HCSUS) is the first major research effort to collect information on a nationally representative sample of people in care for HIV infection.

HCSUS is examining costs of care, utilization of a wide array of services, access to care, quality of care, quality of life, unmet needs for medical and nonmedical services, social support, satisfaction with medical care, and knowledge of HIV therapies.

Who Is Conducting HCSUS?

HCSUS is funded through a cooperative agreement between the Agency for Health Care Policy Research (AHCPR) and RAND—a private nonprofit research institution in Santa Monica, CA. Supplemental funding has been provided by the:

• Health Resources and Services Administration (HRSA).
• National Institute of Mental Health (NIMH).
• National Institute of Aging (NIA).
• National Institute of Drug Abuse (NIDA).
• National Institute of Dental and Craniofacial Research (NIDR).
• Office of Minority Health Research (OMR).

HCSUS is being conducted by a consortium of private and Government institutions, centered at RAND. Local and national advisory groups have been established to facilitate communication between the HIV community and the research consortium.

What Is the Scope of HCSUS?

HCSUS is composed of a core study and several supplemental studies. The core study has enrolled a national probability sample of 2,864 HIV-infected adults who were receiving ongoing or regular medical care in the first 2 months of 1996. Respondents were sampled from 28 urban areas and 24 clusters of rural counties in the continental United States. Patients receiving services in hospitals, clinics, and private practice settings were enrolled. HCSUS oversampled women and members of staff model health maintenance organizations, to obtain more precise information on these specific populations.

Supplemental studies are examining HIV care delivery in rural areas, prevalence of mental and substance abuse disorders, oral health of HIV-positive individuals, and issues related to HIV-infected persons over 50 years of age. A supplemental sample of persons receiving care in rural areas was obtained to augment the core rural sample and to provide a basis for studies focused on the rural population with HIV infection. Another supplemental project is collecting data from the providers of care to HCSUS respondents.

The HCSUS design includes a baseline in-person interview with sampled patients, two follow-up interviews scheduled for 6 months and 12 months after the baseline interview, and abstractions of data from patients' medical, pharmaceutical, and billing records. All baseline and followup interviews were completed as of January, 1998. Abstraction of record data is currently in progress. In addition, a supplemental interview containing an standardized instrument to diagnose psychiatric disorders was administered to a subsample of approximately 1500 HCSUS respondents in conjunction with the first follow-up interview. Further, blood samples have been collected from a majority of HCSUS respondents and virological analyses are being initiated.

What Will HCSUS Examine?

The HCSUS will address a broad array of issues relevant to public policy formulation and to health services research:

• Cost, use, and quality of care.
• Access to care.
• Unmet needs for care.
• Quality of life.
• Social support.
• Knowledge of HIV.
• Clinical outcomes.
• Mental health.
• The relationship of these variables to provider type and patient characteristics.

Public use tapes containing data from the baseline interviews will be available in the summer of 1999. Data from subsequent interviews and from records abstraction will become available for public use subsequently.

The HCSUS Consortium

Sources of Federal Funding

Agency for Health Care Policy and Research (AHCPR)
Health Resources and Services Administration (HRSA)
National Institute of Aging (NIA)
National Institute of Allergy and Infectious Diseases (NIAID)
National Institute of Drug Abuse (NIDA)
National Institute of Dental and Craniofacial Research (NIDR)
National Institute of Mental Health (NIMH)
Office of the Assistant Secretary for Planning and Evaluation
Office of Minority Health Research (OMR)

Supplemental funding has also been provided by private-sector organizations, including the Robert Wood Johnson Foundation, Merck and Co., and Glaxo-Wellcome.

Major Research Institutions

RAND
National Opinion Research Center
Project Hope
Charles R. Drew University
University of California, Los Angeles
University of California, San Diego
Veterans Affairs Medical Center, San Diego

Other Participants

Albert Einstein College of Medicine
Baylor University
Boston University
Brown University
Center for the Study of Healthcare Provider Behavior, VAMC, Sepulveda
Columbia University
Denver Department of Public Health
Emory University
Georgetown University
Harvard University
Jefferson Medical College
Kaiser Permanente Medical Care Program of Northern California
Louisiana State University
Mount Sinai Medical Center
Northwestern University
San Francisco Department of Public Health
Seton Hall University
Southern Illinois University
University of California, Davis
University of Colorado
University of Miami
University of Pennsylvania
University of Pittsburgh
University of Rochester
University of Southern California
University of South Florida
University of Washington
Virginia Commonwealth University
Washington University
Being Alive, Los Angeles and other AIDS community organizations

More Information

For more detailed information about HCSUS, contact:

John Fleishman
Center for Cost and Financing Studies
Agency for Health Care Policy and Research
540 Gaither Road, Suite 5000
Rockville, MD 20850
Phone: (301) 427-1674
E-mail: John.Fleishm@ahrq.hhs.gov