through three serial interviews with a national probability sample of HIV-infected adults receiving regular medical care in the first 2 months of 1996 and interviews with providers and caregivers. Additional data were collected through health, dental, pharmacy, and billing record abstraction (Bozzette et al., 1998; Frankel et al., 1999; Shapiro et al., 1999). Participants were identified using a three-stage probability design with population-proportion-to-size sampling in which cases were randomly selected based on geographic location, provider, and patient (RAND, 2011). Of 4,042 eligible participants, 76 percent were interviewed (Andersen et al., 2000), yielding data on approximately 3,000 HIV-infected persons receiving care in hospitals, clinics, HMOs, or private practices who were living in urban areas or clusters of rural counties in the contiguous United States. The study population included racial and ethnic minorities, adult males and females with varying levels of education, routes of HIV infections, and health care service coverage (see Shapiro et al., 1999).
HCSUS consisted of a core study that explored the “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” and seven supplemental studies (RAND, 2011). In addition to interviews, participants’ medical, financial, and pharmaceutical records were abstracted, and a subset of participants had blood drawn to measure CD4+ T-cell count, viral load, and the presence of genotypic and phenotypic sequences associated with antiviral resistance (RAND, 2011).
Medical Monitoring Project
Initiated in 2005 in response to the IOM report Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act (IOM, 2004), MMP is a CDC-sponsored population-based surveillance system currently designed to collect comprehensive clinical and behavioral services need, utilization, and outcomes data on a nationally representative sample of adults (≥18 years of age) living with HIV/AIDS who are receiving medical care from outpatient facilities in the United States and Puerto Rico (Blair et al., 2011). Approximately 480,000 of the 942,000 diagnosed HIV-infected individuals in the United States are retained in clinical HIV care (CDC, 2011d). It is this population from which MMP draws. MMP is the first project since HCSUS that is designed to obtain comprehensive information about HIV care from a nationally representative population of people with HIV who are in care. As discussed in greater detail in Chapter 3, MMP employs a probability proportional to size sampling design to obtain cross-sectional probability samples of its target population. Data are obtained from individual patient interviews and medical record