An Inventory Of Federally Sponsored HIV And HIV-Relevant Databases. Database: Pediatric Spectrum of HIV Disease (PSD) Project

07/01/2000

Purpose Of The Database And Study Design: The PSD is designed to monitor: trends in pediatric HIV-related care (e.g., treatment, prophylaxis for OIs, and immunologic and virologic testing); clinical course of HIV infection in children (e.g., occurrence of manifestations of HIV infection, hospitalizations, long-term outcomes, and death); and social circumstances of HIV positive children (e.g., changes in caretakers and school attendance).

Nature Of The Data Collected: Longitudinal medical record reviews conducted to study a natural cohort of HIV positive and HIV-exposed children

Unit Of Analysis: Individual patients treated at hospital-based outpatient clinics

Data Collection Methods: PSD has conducted active surveillance of pediatric HIV infection and perinatal HIV exposure since 1988 in multiple clinical facilities in eight geographic areas in the US. The project is currently conducted in six project sites (New York City, Puerto Rico, Los Angeles, District of Columbia, Texas, and Massachusetts) which coordinate data collection and analysis for their region. Eligible children are identified for Parts A and B through key care providers. Data abstractors supported by the project review all available medical records of eligible children in participating hospitals. All HIV positive children are eligible for enrollment in Part A, which is a long-term prospective medical record review study involving data abstraction at six month intervals. Both HIV-exposed and HIV positive children are eligible for enrollment in Part B, special studies which involve one-time abstraction of medical records of selected subgroups of children to address new research questions. For Part A, data entry occurs at each site into a data management system designed by CDC. For Part B, completed data forms are mailed to CDC for computer entry. Intensive training along with close coordination and supervision ensures accuracy and comparability of the data across sites.

General Attributes: In its tenth year of operation, PSD has enrolled more than 13,125 children, including 4,541 HIV positive children. Each site is currently monitoring between 265 and 1,000 HIV positive children for Part A. For Part B, a total of 1,200 HIV-exposed children born in 1995 were enrolled in a special study completed in FY 1997. In that study, implementation of PHS guidelines for preventing perinatal HIV infection was assessed.

Major Data Constructs And Key Data Elements: Demographic characteristics; mode of HIV exposure; birth history; AIDS-defining conditions; other clinical conditions (e.g., bacterial infections, nonspecific finding for greater than two months, progressive neurological disease, other infectious diseases, tuberculosis, and other possibly HIV-related diagnoses), diagnostic, immunologic, and virologic test results; treatment and prophylaxis, hospitalization dates and discharge diagnoses; date and cause of death; and social data.

Strengths And Weaknesses Of The Study Design And Database: PSD is one of the largest databases in the world for monitoring HIV-exposed and HIV positive children. More than ten years of follow-up has been undertaken for some HIV positive children. PSD provides the capacity to track trends in the pediatric HIV epidemic.

Gaps In The Data Collected And Factors Leading To The Gaps: Data are abstracted from pediatric medical records only, so information on maternal history and in utero exposures is limited. Social data may not be well documented in the medical record.

Feasibility Of Linking With Other Databases: Linkage is feasible.

Process To Access The Database And Contact Person: For more information contact: 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:

Thomas P, Mundy T, Abrams EJ, Bornschlegel K, et al. Aging cohort of perinatally HIV positive children in New York City (NYC).International Conference on AIDS. 12: 159 (Abstract No. 175/13363), 1998.

Ortiz I, Lugo RG, Perez CM, Suarez E, et al. Decreasing trends in wasting syndrome and failure to thrive among perinatally HIV positive children in Puerto Rico. International Conference on AIDS. 12: 113 (Abstract No. 13237), 1998.

Maldonado Y, Hill DW, Castro M, Sullivan B, et al. Temporal patterns of prenatal HIV testing and perinatal treatment and intervention strategies. International Conference on AIDS. 12: 405 (Abstract No. 23317), 1998.

Frederick T, Mascola L, Thomas P, Hsu HW, et al. HIV positive children becoming adolescents: a descriptive study of older children in New York City, Los Angeles County, Massachusetts, and Washington DC. International Conference on AIDS. 12: 447-448 (Abstract No. 23529), 1998.

Frederick T, Mascola L, Jackson J, Shin YS, et al. Missed opportunities to reduce perinatal HIV transmission: maternal and neonatal zidovudine (ZDV) use in Los Angeles County (LAC). International Conference on AIDS. 12: 395 (Abstract No. 458/23273), 1998.

Bertolli J, Simonds RJ, Thomas P, Melville S, et al. Implementation of recommendations for the medical care of HIV-exposed infants in the first year of life, USA. International Conference on AIDS. 12: 394-395 (Abstract No. 171/23269), 1998.

Shakarishvili A, Schulte J, Levine W, Kreitner S, et al. Lack of timely prenatal care among women infected with HIV: implications for prevention of perinatal HIV transmission in the United States. International Conference on AIDS. 11(2): 158 (Abstract No. We.C.3585), 1996.

Barnhart HX, Caldwell MB, Thomas P, Mascola L, et al. Natural history of human immunodeficiency virus disease in perinatally infected children: an analysis from the Pediatric Spectrum of Disease Project. Pediatrics. 97(5): 710-716, 1996.