The sample is a major strength of the current study. The sample represents 2 cohorts of youth living with HIV, each from a major AIDS epicenter. This sample of 529 youth represents a major accomplishment in recruiting youth living with HIV. There are an estimated 110,000 to 250,000 young people living with HIV in the United States, but fewer than 20,000 young people have been identified as seropositive,33
and only 1500 could be identified as being linked to care in 1995 when the pre-HAART cohort for the current study was recruited.34
The challenges in identifying and subsequently linking seropositive youth to care suggest the need for early detection of HIV among young people, as one quarter of the 40,000 new HIV infections in the United States annually are among individuals under age 21.35
The 2 cohorts of youth living with HIV, pre- and post-HAART, were not significantly different in their age, gender, ethnicity, or self-reported sexual orientation. This sample reflects the ethnic diversity and socioeconomic profile of youth living with HIV in the United States. Without the Miami site, cohort 2 had fewer women, which might explain the lack of a gender effect. However, the youth recruited post-HAART knew their diagnosis for a year longer and were significantly more ill than youth recruited pre-HAART. Given the availability of HAART, it is surprising that the post-HAART youth experienced more symptoms. This suggests that although they are being identified as HIV-positive at a younger age, these youth are being identified later in the progression of the disease. Therefore, it is also likely that they were infected at a younger age. These findings indicate the need to mount efforts for the early detection of HIV. Health care providers need to assess an adolescent patient's sexual and substance use behavior in order to appropriately offer HIV testing, so that young people can be identified earlier in their disease progression.
Recently, there have been a number of concerns expressed regarding the impact of HAART on the risk behaviors of persons living with HIV.16,36-38
The fears concerning increased risk behaviors as a result of HAART are supported by the findings from this study. Youth post-HAART were twice as likely to have had unprotected sex in the previous 3 months than were pre-HAART youth. Although this study is cross sectional and, therefore, cannot imply causation, these findings indicate the need for continued attention to the issue of sexual risk and the impact of HAART. Future longitudinal studies are needed that assess changes in risk behaviors among this group over time.
In addition to engaging in sexual risk behavior that could spread HIV, these youth are also engaging in higher levels of other problem behaviors. Post-HAART youth were over twice as likely as pre-HAART YLH to have used alcohol or marijuana, 3 times as likely to have used crack cocaine, and almost 3 times as likely to have used any hard drug in the previous 3 months. These analyses reflect frequent use (>10 times for each substance), not simply recreational use. Post-HAART youth were also more likely than pre-HAART youth to have committed a delinquent act in their lifetime or spent time in jail. There seems to be a constellation of risk for some youth. Consequently, youth involved in institutional systems due to their engagement in other problem behaviors need to be assessed and provided HIV prevention services. For example, these data suggest that HIV prevention activities and HIV testing for youth involved in the juvenile justice system are warranted.
The 2 cohorts of YLH were recruited from very similar, and in many cases the same, agencies. Considering the cohorts were demographically similar, it is not likely that the difference between these 2 groups' behaviors reflects where the youth were recruited. Recruitment strategies were also very similar, and potential differences in the samples because of the study inclusion criteria were controlled for in the analysis. Consequently, these data suggest that post-HAART youth are engaging in multiple problem behaviors at higher rates than did pre-HAART youth.
Furthermore, youth post-HAART experienced a poorer quality of life than YLH prior to HAART. Post-HAART YLH were significantly more likely to be emotionally distressed than were YLH in the pre-HAART cohort. About 53% of the post-HAART youth reported currently being on a HAART regime whereas overall about 76% had current or past HAART utilization. One might expect post-HAART youth to maintain a sense of well-being because of the effects of current treatments (eg, prolonged lifespan, increased choice in treatment). Contrary to what we expected, our data indicate that YLH report more emotional distress after the year in which HAART was introduced. As previously mentioned, post-HAART youth were being identified later in their disease progression and were experiencing more HIV-related symptoms. Therefore, the increased emotional distress is not surprising. However, it is unclear why more youth are not currently taking HAART. It may be that physicians are reluctant to prescribe antiretroviral medications to certain subpopulations of youth, such as substance-using youth, because they fear the youth will not adhere to the treatment regimen.39,40
In addition, age has been found to be related to greater nonadherence among HIV-positive individuals, with younger YLH being less adherent,41,42
which may also impact medical provider decisions to prescribe HAART. Therefore, YLH may be living longer with HIV, but we cannot assume their quality of life is improving. Future studies are necessary to determine the factors and develop interventions related to increasing adherence to HAART by YLH and increasing physician prescribing behavior.
The limitations of this study should be recognized. We have relied on self-reports for sexual risk and substance use behavior, which has potential for reporting biases. However, a number of precautions were taken to minimize reporting bias. To enhance veracity of self-report of behaviors and attitudes, sensitive questions (ie, sexual and substance use behavior) were delivered via audio-computer-assisted self-interviewing (ACASI). In addition, careful and thorough training of interviewers in neutral, nonjudgmental administration of the interview was ensured through review of audiotaped interviews, and the use of a relatively restricted reporting period may have reduced the potential for recall biases. Further, because these data were collected in different years, there may have been other confounding variables that were not controlled in the current analysis. Finally, because this is a cross-sectional study, causal inferences cannot be made from associations presented. However, this study suggests that future research examining this issue is warranted.
These data suggest that young people living with HIV after the introduction of HAART engage in problem behaviors at a rate higher than that of YLH pre-HAART. Traditionally, YLH have been neglected as a focus for preventive interventions. With the introduction of new therapies and increasing resources being allocated for patient access to those new therapies, YLH are in further danger of being ignored. However, the need for interventions designed for YLH has not changed since the introduction of HAART: targeted interventions for YLH that address risk behaviors and aim to improve quality of life are more needed now than ever before.