An Inventory Of Federally Sponsored HIV And HIV-Relevant Databases. Database: HIV/AIDS Reporting System (HARS)

07/01/2000

Purpose Of The Database And Study Design: The goals of HARS are to: monitor trends in HIV and AIDS in the US and determine the scope of severe morbidity due to infection with HIV and its related conditions. HIV and AIDS surveillance data are used to allocate resources for patient care, target HIV prevention activities, and evaluate the impact of public health recommendations.

Nature Of The Data Collected: Predominantly medical record reviews, some interviews with health care providers, and occasional interviews of patients; also laboratory reports and death certificates

Unit Of Analysis: Individual patients

Data Collection Methods: AIDS case reporting responsibility varies among States. In some jurisdictions, health care providers are required by State communicable disease statutes to report AIDS case reports to local health departments (e.g., city or county). Those agencies then in turn submit copies of those reports to State health departments. In other states, the State health department is responsible for receipt of reports and investigation of AIDS cases. The statutory definition of which health care providers must report HIV or AIDS cases varies by States. In some jurisdiction, clinical laboratories must report patients who are found through laboratory testing to have a condition meeting the HIV or AIDS case definition. Laboratories directly report the case to the health department. Following submission of an initial AIDS case report, a case investigation is completed which involves review of medical records. An interview with the reporting physician may be conducted in those instances in which HIV transmission factors or other information required to complete the investigation is unclear. An interview of the patient is sometimes required to ascertain missing information. A similar process is undertaken in States with HIV reporting. Completed HIV/AIDS investigations are documented using standardized report forms: the Adult HIV/AIDS Confidential Case Report and the Pediatric HIV/AIDS Confidential Case Report. Case report forms are entered into the HARS at the State and local level and these data are transmitted electronically to CDC on a monthly basis. No patient names are transmitted to CDC. Rather, a SOUNDEX, an alphanumeric code based on patient name, is automatically generated by HARS.

General Attributes: Reporting of AIDS cases was instituted for all States by 1985.

Major Data Constructs And Key Data Elements: Reporting of AIDS and HIV follows a well-established set of case criteria. The case report forms gather detailed data regarding the following constructs: vital status, HIV exposure category, AIDS or HIV case definition category, clinical or laboratory information required to meet the HIV or AIDS case definition, date of diagnosis, geographic location, and patient demographic characteristics. In addition, information on payer, facility of diagnosis, antiretroviral use, treatment and service referrals, and mortality (e.g., cause of death, place of death) may be collected but information is often incomplete. The Pediatric HIV/AIDS Confidential Case Report also collects data regarding: maternal HIV testing history, use of zidovudine or other antiretrovirals in pregnancy, during delivery, or for the neonate, and prenatal care utilization.

Strengths And Weaknesses Of The Study Design And Database: Completeness and accuracy of HIV and AIDS case reporting is the responsibility of the local health department with jurisdiction over case reporting. Historically, reporting of HIV and AIDS cases by health departments has been categorized as passive or active. In the case of passive reporting, health departments rely solely on health care providers to submit case reports. In the instance of active reporting, health departments work closely with an array of health care providers to assure that reporting is complete and accurate. Active surveillance also commonly involves using secondary sources for case reports such as systematic review of death certificates, patient lists at major HIV ambulatory care clinics, Medicaid claims files, and other administrative databases. Completeness of HIV and AIDS case reporting varies across local jurisdictions and States. Moreover, completeness of the case report forms varies substantially by jurisdiction. Deaths are ascertained by matching HIV/AIDS registries to vital registries in most States.

Gaps In The Data Collected And Factors Leading To The Gaps: As of November 1999, name-based HIV reporting is required in 33 States and another six States have code-based or hybrid (name-to-code) systems. Once an AIDS case has been reported, it is unlikely that additional diagnostic or other longitudinal data will be added to the case report. As a result, the case reports may be considered a base-line assessment of the patient’s clinical status at the time of AIDS case reporting.

Feasibility Of Linking With Other Databases: Linkage at the local or State level is very feasible. A number of research and other projects have been conducted that have linked HARS databases to insurance claims, administrative records, National Death Index (NDI) other vital statistics records, observational study files, clinical trial files, and other databases.

Process To Access The Database And Contact Person: AIDS Public Information Data Set (PIDS) is available at http://www.cdc.gov. Contact person: Chief, Surveillance Branch, Division of HIV/AIDS Prevention, Surveillance, and Epidemiology, CDC, Mailstop E-47, 1600 Clifton Road, NE, Atlanta GA 30333; (404) 639-2050.

Selected Citations:

Lindegren ML, Byers RH, Thomas P, Davis SF, et al. Trends in perinatal transmission of HIV/AIDS in the United States. JAMA. 282(6): 531-538, 1999.

Klevens RM, Diaz T, Fleming PL, Mays MA, et al. Trends in AIDS among Hispanics in the United States, 1991-1996. AJPH. 89(7): 1104-1106, 1999.

Klevens RN, Fleming PK, Neil JJ, Li J. Is there really a heterosexual AIDS epidemic in the United States? Findings from a multistate validation study, 1992-1995. American Journal of Epidemiology. 149(1): 75-84, 1999.

Chiasson MA, Berenson L, Li W, Schwartz S, et al. Declining HIV/AIDS mortality in New York City. JAIDS. 21(1): 59-64, 1999.

Neal JJ, Fleming P. Trends in heterosexually acquired AIDS in the United States, 1990 through 1996. International Conference on AIDS. 12: 1036 (Abstract No. 60201), 1998.

National Center for HIV, STD, and TB Prevention. HIV/AIDS Surveillance Report: US HIV and AIDS Cases Reported Through June 1998. 10(1): 1-40, 1998. Report updates may be obtained from the CDC home page: http://www.cdc.gov, select the topic “Publications, Software, & Products.”

Muthambi BR, Chiasson MA, Lehner T, Singh TP. Improved survival time after diagnosis with AIDS among adult in New York City (NYC), 1980-1994. Conference on Retroviruses and Opportunistic Infections. 80 (Abstract No. 9a), 1998.

Melvin G, Corson K, Malamud H, et al. Success in implementing public health service guidelines to reduce perinatal transmission of HIV- Louisiana, New Jersey, and South Carolina, 1993, 1995, and 1996. MMWR. 47(33) 688-691, 1998.

McFarland JW, Singh TP, Vasquez F, Forlenza SW. The increasing impact of injecting drug use (IDU) on the AIDS epidemic, New York City (NYC), the first 100,000 AIDS cases. Conference on Retroviruses and Opportunistic Infections. 103 (Abstract No. 128), 1998.

Forlenza SW, Vazquez F, Singh TP. Using multiple Department of Health (DOH) databases to optimize AIDS surveillance opportunities and pitfalls. International Conference of Emerging Infectious Diseases. (Abstract p. 82), 1998.

Division of HIV/AIDS Prevention-Surveillance and Epidemiology, National Center for HIV, STD, and TB Prevention, CDC. AIDS among persons aged > 50 years- United States, 1991-1996. 47(2): 21-27, 1998.

Denning P, Fleming P. Beyond clinical trials- population-based HIV viral load monitoring and antiretroviral therapy. Conference on Retroviruses and Opportunistic Infections. 81 (Abstract No. 11), 1998.

Dean-Gaitor H, Fleming PL, Ward JW. Trends in AIDS incidence among black persons- United States, 1990-1996. International Conference on AIDS. 12: 131-132 (Abstract No. 13230), 1998.

Chiasson MA, Berenson L, Li W, Schwartz S, et al. Accelerating decline in New York City AIDS mortality. Conference on Retroviruses and Opportunistic Infections. 80 (Abstract No. 9b), 1998.

Wortley PM, Fleming PL. AIDS incidence in women: recent trends. National Conference on Women and HIV. 108 (Abstract No. 106.2), 1997.

Denning P, Fleming PL. Estimating recent patterns of HIV infection among adolescents and young adolescents. Conference on Retroviruses and Opportunistic Infections. 133 (Abstract No. 375), 1997.