HIV Cost and Services Utilization Study (HCSUS)

CONCLUDED STUDY - conducted 1994-2000

The HIV Cost and Services Utilization Study (HCSUS) was the first major research effort to collect information on a nationally representative sample of people in care for HIV infection. As HIV/AIDS spreads into different communities and as new therapies become available, policymakers require reliable information on the health care services persons with HIV disease are receiving and on the costs of those services. This information, which HCSUS provides, is needed to guide policy decisions on the allocation of limited health care resources. The original study was active from September 1994 to October 2000, and related studies continue to add to our understanding of AIDS. Results from the HCSUS appear in peer-reviewed journal articles. For an overview of study findings, please visit the bibliography section.

Sponsors

HCSUS was funded through a cooperative agreement between the Agency for Healthcare Research and Quality (AHRQ) and RAND–a private nonprofit research institution in Santa Monica, California. Supplemental direct and in-kind funding has been provided by the following:

Public Agencies:

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

Private Foundation:

  • Robert Wood Johnson Foundation (RWJF)

Private Corporations:

  • Bristol
  • Glaxo
  • GenProbe
  • Merck
  • National Cancer Institute (NCI)
  • Quest
  • Roche
  • Virologics

HCSUS was conducted by a consortium of private and government institutions centered at RAND. A national Community Advisory Board facilitated communication between the HIV community and the research consortium. A national Scientific Advisory Committee lent their expertise to assure the quality of the study.

Design

The approach was a three-stage probability design with population-proportion-to-size (PPS) sampling. In the first stage, urban areas were sampled probabilistically proportional to numbers of AIDS cases reported. In the second stage, estimates of provider caseload were obtained through provider surveys, and these providers were sampled proportional to caseload. In the third stage, individual patients with HIV were sampled within practices, taking into account the possibility that subjects may obtain care from more than one site (multiplicity). We approached anonymously selected subjects for interview only after providers or their agents obtained permission. RAND and a local institutional review board (IRB) reviewed all consent forms and informational materials. Whenever a local board was unavailable, selected providers signed Single Project Assurances or Independent Investigator Agreements as appropriate.

Scope

HCSUS was composed of a core study and seven supplemental studies. The core study examined cost, use, and quality of care; access to and unmet needs for care; quality of life; social support; knowledge of HIV; clinical outcomes; mental health; and the relationship of these variables to provider type and patient characteristics. It collected data on over 3700 HIV-positive persons in care in hospitals, clinics, and private practices in 28 urban areas and 24 clusters of rural counties in the contiguous United States. Of those surveyed, 2864 completed the full baseline interview. Others completed a short-form interview or had basic information supplied by the medical providers enrolled in the study. Supplemental studies used data from the core study to examine HIV in rural areas, early disease stages, and older persons with HIV; and the relationship between HIV disease and mental health, drug use, oral health, and antiretroviral therapy. A baseline interview and two follow-up interviews have been completed. Nearly half of the baseline respondents also received a separate mental health and drug interview. We have conducted interviews with formal and informal caregivers. All interviews were conducted using computer-assisted personal interview (CAPI) instruments designed for this study. A subset of the original cohort had blood drawn for CD4+ lymphocyte count, viral load, and the presence of genotypic and phenotypic sequences associated with antiviral resistance. Abstractions of medical, financial, and pharmaceutical records have been completed. Data from these collection efforts is now available through AHRQ.

Participants

Major Research Institutions:

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

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
  • 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
  • AIDS community organizations