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

  • M R Frankel
  • M F Shapiro
  • N Duan
  • S C Morton
  • S H Berry
  • J A Brown
  • M A Burnam
  • S E Cohn
  • D P Goldman
  • D F McCaffrey
  • S M Smith
  • P A St Clair
  • J F Tebow
  • S A Bozzette
Publication Date
Dec 01, 1999
  • Design
  • Mathematics
  • Medicine


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.

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