Objective: To define the incidence, characteristics, and survival of children with perinatally acquired human immunodeficiency virus (HIV) infection and encephalopathy.
Design: Cross-sectional and longitudinal data collected from 1811 HIV-infected children in a multicenter active surveillance study.
Setting: Health departments and medical centers in six areas of the United States.
Results: HIV encephalopathy was diagnosed in 178 (23%) of 766 children with perinatally acquired immunodeficiency syndrome (AIDS). The median age at diagnosis of encephalopathy was 19 months. Among infected children, the estimated risk of having HIV encephalopathy by age 12 months was 4.0% (95% confidence interval, 2.6% to 6.0%). Children with HIV encephalopathy had more hospitalizations (median, 4) than children with other AIDS-defining conditions (median, 2; p = 0.002) and lower CD4+ T-lymphocyte counts in the first year of life (median, 444 cells/mm3). Estimated median survival after diagnosis was 22 months, similar to the 20 months for children with Pneumocystis carinii pneumonia.
Conclusion: HIV encephalopathy in children with perinatally acquired AIDS is a common condition and is associated with severe morbidity evidenced by frequent hospitalizations, severe immunodeficiency, and short survival.