Public Health Reports®

This article describes a conceptual framework for HIV behavioral surveillance in the United States. The framework includes types of behaviors to monitor, such as risk behaviors, HIV testing behaviors, adherence to HIV treatment, and care-seeking for HIV/AIDS. The framework also describes the population groups in which specific behaviors should be monitored. Because the framework is multifaceted in terms of behaviors and populations, behavioral data from multiple surveillance systems are integrated to achieve HIV behavioral surveillance program objectives. Defining surveillance activities more broadly to include behavioral surveillance in multiple populations will provide more comprehensive data for prevention planning, and lead to a more effective response to HIV/AIDS in the United States.

HIV behavioral surveillance in the United States is conducted among three groups: infected populations, high-risk populations, and the general population. We describe the general population component of the overall U.S. HIV behavioral surveillance program and identify priority analyses. This component comprises several data systems (ongoing, systematic, population-based surveys) through which data on risk behaviors and HIV testing are collected, analyzed, and disseminated. Multiple data systems are needed to balance differences in scope and purpose, as well as strengths and weaknesses of the sampling frames, mode of administration, and frequency of data collection. In a concentrated epidemic, such as in the United States, general population data play a small but important role in monitoring the potential spread of infection more broadly, particularly given increases in HIV transmission through heterosexual contact.

The Centers for Disease Control and Prevention, in collaboration with 25 state and local health departments, began the National HIV Behavioral Surveillance System (NHBS) in 2003. The system focuses on people at risk for HIV infection and surveys the three populations at highest risk for HIV in the United States: men who have sex with men, injecting drug users, and high-risk heterosexuals. The project collects information from these three populations during rotating 12-month cycles.

Methods for recruiting participants vary for each at-risk population, but NHBS uses a standardized protocol and core questionnaire for each cycle. Participating health departments tailor their questionnaire to collect information about specific prevention programs offered in their geographic area and to address local data needs.

Data collected from NHBS will be used to describe trends in key behavioral risk indicators and evaluate current HIV prevention programs. This information in turn can be used to identify gaps in prevention services and target new prevention activities with the goal of reducing new HIV infections in the United States.

In collaboration with the Centers for Disease Control and Prevention, participating state and local health departments, universities, and community-based organizations applied venue-based, time-space sampling methods for the first wave of National HIV Behavioral Surveillance of men who have sex with men (NHBS-MSM). Conducted in 17 metropolitan areas in the United States and Puerto Rico from November 2003 through April 2005, NHBS-MSM methods included: (1) formative research to learn the venues, times, and methods to recruit MSM; (2) monthly sampling frames of eligible venues and day-time periods that met attendance, logistical, and safety criteria; and (3) recruitment of participants in accordance with randomly generated venue calendars. Participants were interviewed on HIV risk and prevention behaviors, referred to care when needed, and compensated for their time. By identifying the prevalence and trends of HIV risk and prevention behaviors, NHBS-MSM data may be used at local, state, and federal levels to help obtain, direct, and evaluate HIV prevention resources for MSM.

While disease surveillance for HIV/AIDS is now widely conducted in the United States, effective HIV prevention programs rely primarily on changing behavior; therefore, behavioral data are needed to inform these programs. To achieve the goal of reducing HIV infections in the U.S., the Centers for Disease Control and Prevention, in cooperation with state and local health departments, implemented the National HIV Behavioral Surveillance System (NHBS) for injecting drug users (IDUs) in 25 selected metropolitan statistical areas (MSAs) throughout the United States in 2005. The surveillance system used respondent-driven sampling (RDS), a modified chain-referral method, to recruit IDUs for a survey measuring HIV-associated drug use and sexual risk behavior. RDS can produce population estimates for specific risk behaviors and demographic characteristics. Formative assessment activities—primarily the collection of qualitative data—provided information to better understand the IDU population and implement the surveillance activities in each city. This is the first behavioral surveillance system of its kind in the U.S. that will provide local and national data on risk for HIV and other blood-borne and sexually transmitted infections among IDUs for monitoring changes in the epidemic and prevention programs.

Rapid HIV Behavioral Assessment (RHBA) is a method for collecting much-needed information about sexual, drug-use, and HIV testing behaviors from people at high risk for HIV infection in areas with low-to-moderate HIV prevalence.

During 2004, RHBAs were conducted in seven small to moderate-sized cities in the United States during Gay Pride events. Anonymous 10-minute interviews were administered to eligible attendees using handheld computers. Depending on the city, between 47% and 97% of individuals approached agreed to hear more about the survey. Enrollment rates exceeded 90% in every location.

RHBAs conducted during 2004 were well received by the gay and public health communities. They were simple to organize and administer, flexible, and cost-efficient, suggesting that this approach holds promise for expansion to additional high-risk groups and geographic locations. RHBAs can provide state and local health departments with demographic and behavioral data that can be used to design, target, and evaluate local HIV prevention programs.

Since the height of HIV incidence in the mid-1980s, advances in treatment have delayed progression of HIV infection. As a result, surveillance of AIDS cases alone is no longer sufficient to monitor the current status of the HIV epidemic. At the national level, new HIV diagnoses and progression of these cases to AIDS are used to describe the epidemic. The capacity to monitor the national HIV epidemic has consistently improved over the last several years. An increasing number of states report diagnosed HIV cases to the national surveillance system, allowing data from this system to better represent the national picture. Monitoring the national HIV epidemic depends on a nationwide system using standardized methods of data collection, and establishing such a comprehensive system remains one of the highest priorities for national HIV case surveillance.

The Centers for Disease Control and Prevention maintains a national surveillance system that provides data about the HIV/AIDS epidemic for program planning and resource allocation. Until recently, incidence of HIV infection (i.e., the number of individuals recently infected with HIV) has not been directly measured. New serologic testing methods make it possible to distinguish between recent and long-standing HIV-1 infection on a population level. This article describes the new National HIV Incidence Surveillance System.