Using a mandatory reporting database to recruit persons living with HIV/AIDS to study access to care in Mississippi

Using funds provided by the Ryan White Care Act, we conducted a statewide needs assessment of persons living with HIV/AIDS (PLWHA) in Mississippi as required by provisions of the Act. Most published research addressing access to care for PLWHA is based on convenience samples of persons already accessing care in specified clinic locations. For this study of a single state with a well-established mandatory reporting system, we conducted a cross-sectional study interviewing a random sample of PLWHA across the state of Mississippi. The Mississippi State Department of Health has maintained the Mississippi HIV/AIDS Reporting System since its inception in 1980. The database tracks all reported cases of HIV+ cases and includes name, age, last-known address, and other contact information. The sample was selected from a frame of all recorded PLWHA in Mississippi at that time, regardless of their association with care facilities. The purpose of this article is to describe the design and methodology of this study, difficulties encountered in locating this hard-to-reach population, multimethod recruiting strategies and outcomes, and lessons learned. Locating participants using a truly random sample from a mandatory reporting database was resource intensive. However, data collected as a result of these efforts have provided invaluable information on a number of topics important to PLWHA.