OLDER CHILDREN AND ADOLESCENTS LIVING WITH PERINATALLY ACQUIRED HUMAN-IMMUNODEFICIENCY-VIRUS INFECTION

Objective. To describe the clinical, immunologic, and psychosocial cha racteristics of children living with perinatally-acquired human immuno deficiency virus (HIV) infection beyond the age of 9 years. Methods. T his is a descriptive cohort study of 42 surviving perinatally infected children older than 9 years followed at the Children's Hospital Acqui red Immunodeficiency Syndrome (AIDS) Program (part of a university-bas ed inner city medical center) as of June 1993. The study is based on m edical record data of clinical, immunologic, and psychosocial paramete rs. Results. The cohort includes 20 boys and 22 girls with a mean age of 136 months. The mean age at diagnosis of HIV infection was 88 month s, and 59.5% were asymptomatic at the time of diagnosis. Currently, af ter a mean follow-up period of 48 months from diagnosis, 23.8% remain asymptomatic, 19.1% have non-AIDS-defining HIV-related symptoms, and 5 7.1% have AIDS; 85.7% of the cohort did not develop HIV-related sympto ms until after 48 months of age (late-onset prolonged survivors). Ther e was an average annual decline of 71.4 CD4+ cells/mu L in the cohort from the ages of 7 to 16 years, and 21.4% have a current CD4+ lymphocy te count of greater than 500 cells/mu L, 28.6% between 200 and 500 cel ls/mu L, and 50% less than 200 cells/mu L; 76% are orphaned as a resul t of maternal death, with the majority of the cohort (60%) cared for b y extended family members. Disclosure of diagnosis has occurred in 57. 1%. The vast majority of the cohort (76%) are attending regular school , with the remainder in special education. Conclusions. Although close to one quarter of the children and adolescents ages 9 to 16 years liv ing with perinatally acquired HIV infection described in this cohort r emain asymptomatic and have a relatively intact immune system, the rem ainder are living with significant HIV-related symptoms, many of which are chronic in nature and have an impact on daily living. The childre n in this cohort had both significant immunologic deterioration and sy mptomatic disease progression during the mean follow-up period of 48 m onths from the time of diagnosis with HIV infection.