Supplemental HIV/AIDS Surveillance Projects

Adult/Adolescent Spectrum of HIV Disease (ASD)

Overview: The Adult/Adolescent Spectrum of Disease (ASD) project is an ongoing, longitudinal surveillance cohort study that describes the full spectrum and progression of HIV disease, including severe illness and death. Information on AIDS-defining conditions, other illnesses and symptoms, treatments, and lab parameters are abstracted from medical records onto a standardized form. In addition, gynecologic information (e.g., Pap smear, cervical cytology) is collected for women. Data are collected for the 12 months preceding ascertainment and re-abstractions are done every 6 months until the patient dies or is lost to follow-up.

Population: ASD participants must be ≥ 13 years, have a diagnosis of HIV infection, and receive health care at a participating facility in the funded area. In each funded area, facilities serving HIV-infected persons (clinics, hospitals, neighborhood health centers, private medical practices, and emergency departments) are selected to participate as project sites. At each project site, all HIV-infected women and persons belonging to a racial/ethnic minority group are included.

Strengths: ASD data describe the spectrum of HIV disease that is documented in the medical chart. Data have been available since January 1990. ASD data are useful for assessing the prescription of prophylactic and antiretroviral treatment over time and for assessing the level of AIDS-defining conditions for case definition purposes. As of December 2001, more than 50,000 persons had been included in the ASD project.

Limitations: ASD data describe morbidity among persons who received medical care for HIV infection at a participating site (i.e., not population-based). The morbidity information on the medical chart may not be complete. Gynecologic information may be underreported because this information may appear elsewhere (e.g., women may have been cared for by gynecologists rather than HIV specialists). ASD data rely on the thoroughness of diagnostic testing and recording.

HIV Testing Survey (HITS)

Overview: HITS assesses HIV testing patterns among persons at high risk for HIV, evaluates reasons for seeking or avoiding testing, and examines knowledge of state policies for HIV surveillance. In addition, HITS collects behavioral risk information from persons at high risk for infection. The data can also be used to evaluate the representativeness of HIV surveillance data by determining the characteristics of persons who delay testing, are tested anonymously, or are not tested at all.

HITS is an anonymous, cross-sectional survey of populations at high risk for HIV infection. The core populations include MSM, IDUs, and heterosexual adults. To recruit HITS participants, the study is conducted in several cities in a state (generally) at 3 venues: gay bars, street locations in areas of heavy drug use, and STD clinics. At a minimum, 100 persons in each population group are interviewed; thus, states have a minimum sample of 300 persons. Persons who are not tested or who report that they are HIV-positive are interviewed.

In 2001, HITS was conducted in New Orleans (Orleans Parish), Baton Rouge (East Baton Rouge Parish), and Monroe. The sample of 300 persons was distributed among these 3 areas: 50 persons in each population group in New Orleans, 40 in Baton Rouge, and 10 in Monroe.

Population: Regardless of the venue, persons who are at least 18 years of age, able to give informed consent, and have been a resident of the state for at least 1 year are eligible for a HITS interview. In addition, behavioral criteria apply to each risk group: men at MSM venues are eligible if they have had sex with a man within the past 12 months; injection drug users must have injected drugs within the past 12 months; and high-risk heterosexual clients at an STD clinic are eligible if they are at the clinic because of a suspected STD, have not been treated during the past 90 days, are not at the clinic because of referral or follow-up, and have not had homosexual sex within the past 12 months.

Strengths: HITS collects public health information from groups at high risk for HIV; the information includes HIV testing attitudes, history and behaviors, as well as knowledge of testing and risk behaviors.

Limitations: HITS is a cross-sectional survey and relies on a convenience sample for participation. Information collected is self-reported and may be subject to recall bias. Further, HITS data may not represent the entire high-risk population of an area. For example, in Louisiana, information on MSM was collected in only 3 areas of the state (New Orleans, Baton Rouge, and Monroe) and therefore may be limited in its representativeness. Furthermore, data on MSM were collected only in gay bars; MSM who frequent gay bars may not be representative of the entire population of MSM.

Survey of HIV Disease and Care (SHDC)

Overview: SHDC, a cross-sectional review of medical records of HIV-infected persons reported to HARS, was developed to obtain population-based estimates of the clinical characteristics of persons receiving medical care for HIV infection. SHDC collects demographic and clinical information, including the proportions of patients receiving therapy recommended by current treatment guidelines and of those who receive preventive services. Information in the medical records of sampled patients are reviewed for the preceding 12 months and documented on a standardized abstraction form.

Population: Health care providers who have reported an HIV-infected person(s) to HARS are eligible for sampling. Among sampled providers, a listing of their HIV-infected patients is prepared and then sampled systematically with a random start. Women and racial/ethnic minorities are oversampled.

Strengths: SHDC is designed to collect data from a representative sample of patients receiving HIV care so that population-based estimates of the proportion of HIV-infected persons receiving recommended standards of care can be made. Women and members of racial/ethnic minority groups are oversampled to ensure that population-based estimates in these populations are valid. SHDC extracts information from a variety of record sources in order to obtain information on the prescription of HIV antiretroviral therapies, receipt of medical care and social services, and laboratory testing history. Data from SHDC are used to estimate the proportion of persons who received appropriate standards of care for their HIV disease.

Limitations: SHDC is a cross-sectional review, and medical records are the source of the data. Estimates of care cannot be assessed over time, and the quality of the data obtained is dependent on the completeness of documentation in the patient’s medical record. SHDC’s sampling frame is patients who have sought medical care; therefore, population-based inferences about HIV-infected persons who are not in care cannot be made. Although SHDC collects some behavioral information, self-reported adherence to therapies documented in the medical chart may not be known. In addition, data from SHDC may underestimate the amount and type of medical care a patient received if the patient received medical care from more than 1 provider. For example, gynecologic care may be underreported because women may seek this care from a provider who is not an HIV specialist.

Go to Behavioral Surveys