CHARACTERISTICS OF HUMAN-IMMUNODEFICIENCY-VIRUS INFECTED CHILDREN AT THE TIME OF DEATH - AN EXPERIENCE IN THE 1990S

Objective. To describe the changes in the characteristics of human imm unodeficiency virus (HIV)-related deaths in children with perinatally acquired infection. Methods. A retrospective review of all deaths that occurred in HIV-infected children managed at The New York Hospital Pr ogram for Children with AIDS during a 7-year period from January, 1990 , to December, 1996. Differences in the characteristics at death betwe en 15 children who died in 1990 and 10 children who died in 1996 were analyzed. Results. Fifty-eight deaths in our cohort of HIV-infected ch ildren were identified during the 7-year period. The mean age at death was 4.43 years. Sixty-nine percent of children were black, 55% were m ale and 94% were receiving Medicaid. The mean weight/age Z score was - 3.9 and the mean CD4 index was 0.067 with 65% having <50 CD4 cells/mu l at the time of death (TOD). The most common organ/organ systems to b e involved at the TOD were lung (78%) and central nervous system (61%) . Mycobacterium avium complex (MAC) was the most common isolate at the TOD (26%) followed by Pneumocystis carinii (20%) and Pseudomonas aeru ginosa (17%). The leading noninfectious cause of death was cardiac fai lure (9%). Comparison of the characteristics at the TOD between 1990 a nd 1996 revealed significant differences in mean age (2.1 vs. 9.2 year s, P < 0.0001), mean CD4 count index (0.18 vs. 0.02, P < 0.03), mean n umber of organ/organ system in volvement (3.9 vs. 5.9, P < 0.05), perc ent receiving antiretroviral therapy (33% vs. 70%, P < 0.02), mean num ber of years receiving antiretroviral therapy (0.88 vs. 3.86 years, P < 0.01), percent receiving P. carinii pneumonia prophylaxis (27% vs. 1 00%, P < 0.001), percent receiving MAC prophylaxis/therapy (0% vs. 100 %, P < 0.0001), and cause of death from P. carinii pneumonia (53% us. O%, P < 0.01). Conclusions. Compared with children who died in 1990, H IV-infected children who died in 1996 were significantly older, more l ymphopenic and more likely to have a greater number of organ system in volvements and to have received antiviral therapy and antimicrobial pr ophylaxis. In 1996 no child died of P. carinii pneumonia. In 1996 MAC and P. aeruginosa were the two most important opportunistic infections causing death. These changes in the characteristics at death will war rant review of resources used in treating these children and may be cr itical in advising parents and care givers about the prognosis of this chronic infection.