"Because infants and toddlers are more likely to visit their pediatrician on a regular basis, and because physicians believe that administering highly active antiretroviral therapy (HAART) to babies and infants early on helps establish and maintain levels of viral suppression, we weren't really surprised by these results," said the study's lead author, George Siberry, M.D., a pediatrician at the Children's Center.
"However, our study – believed to be one of the first to examine health care utilization patterns of HIV-infected children since the widespread use of HAART – also suggest that the demand for care for HIV-positive children means we need to look carefully at how we are delivering it and what more we can do to improve access and services," he added.
In their report, scheduled for presentation Nov. 3 at the American Academy of Pediatrics 2003 National Conference and Exhibition in New Orleans, investigators at Johns Hopkins and five other institutions from the HIV Research Network report that HIV-positive children – particularly those under 2 years of age – make a high number of outpatient visits and are frequently hospitalized. Furthermore, 90 percent of all HIV-infected children receive antiretroviral (ART) medications.
According to the U.S. Centers for Disease Control and Prevention, by the year 2 001 there were more than 170,000 adults and adolescents and approximately 4,000 children in the United States infected with the HIV virus (these statistics may not include data from all 50 states).
"An understanding of how real HIV patients access the health care system, and what services they do or do not utilize, provides policymakers, medical providers and HIV program managers with the knowledge to make important decisions on HIV care that reflects what is really happening out there in the HIV community," said Siberry.
In the current study, Siberry and colleagues examined the clinical records of 364 HIV-infected children seen in 2000 at five pediatric sites of the HIV Research Network. The children, mostly female and African-American, were all infected by transmission of the virus from their infected mother during pregnancy or delivery.
In particular, researchers focused on the number of inpatient and outpatient visits, in addition to how many children were prescribed ART. They found that HIV-infected children had an average of eight yearly outpatient visits and a one-in-three chance of requiring inpatient admission in the year 2000. HIV-infected children under 2 years of age had more than nine outpatient visits per year and a two-in-three chance of being admitted during that year.
Compared to healthy children in the United States, HIV-infected children are hospitalized 10 times more often and have three times as many yearly outpatient visits. Although hospitalization rates for children with HIV were slightly lower than that of HIV-infected adults, they had 30 percent more outpatient visits.
In addition to younger children, children with more advanced HIV infection, high viral loads, AIDS, or those of non-Caucasian ethnicity had significantly more outpatient visits and hospitalizations in 2000.
"The good news from these findings is that hospitalization rates and outpatient visits for HIV-infected children appear to be three to four times lower than they were for HIV-infected children in the early 1990s when HAART therapy was not available," said Siberry.
The HIV Research Network (HIVRN) comprises 18 medical institutions located across the United States that treat more than 16,000 patients with HIV disease. Each institution assembles data on the clinical and demographic characteristics of its HIV-infected patients, the frequency of each patient's outpatient clinic visits, and the number of inpatient admissions. Participating institutions then send the information to the data coordinating center located at The Johns Hopkins University School of Medicine, where the information is consolidated into a single uniform database.
Co-authors of this study are Kelly Gebo of The Johns Hopkins University School of Medicine; Richard Rutstein of Children's Hospital of Philadelphia; Patricia Flynn of St. Jude's Children's Hospital; and Stephen Spector of the University of California-San Diego.
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