National probability samples in studies of low-prevalence diseases. Part II: Designing and implementing the HIV cost and services utilization study sample

Objective. The design and implementation of a nationally representative probability sample of persons with a low-prevalence disease, HIV/AIDS. Data Sources/Study Setting. One of the most significant roadblocks to the generalizability of primary data collected about persons with a low- prevalence disease is the lack of a complete methodology for efficiently generating and enrolling probability samples. The methodology developed by the HCSUS consortium uses a flexible, provider-based approach to multistage sampling that minimizes the quantity of data necessary for implementation. Study Design. To produce a valid national probability sample, we combined a provider-based multistage design with the M.D.-colleague recruitment model often used in non-probability site-specific studies. Data Collection. Across the contiguous United States, reported AIDS cases for metropolitan areas and rural counties. In selected areas, caseloads for known providers for HIV patients and a random sample of other providers. For selected providers, anonymous patient visit records. Principal Findings. It was possible to obtain all data necessary to implement a multistage design for sampling individual HIV-infected persons under medical care with known probabilities. Taking account of both patient and provider nonresponse, we succeeded in obtaining in-person or proxy interviews from subjects representing over 70 percent of the eligible target population. Conclusions. It is possible to design and implement a national probability sample of persons with a low- prevalence disease, even if it is stigmatized.