Consistent with the literature on HIV adherence among adults19
and general adherence literature,27
our review of research on HIV-infected youth suggests that individual demographic factors and readily observable patient characteristics failed to distinguish adherent from nonadherent individuals. No consistent, predictive sociodemographic relationships with adherence to antiretroviral medications emerged. In contrast, psychosocial factors such as depression and anxiety were most consistently associated with nonadherence across studies. Continuing to examine adherence within the broader contextual issues present in the lives of youth is essential to understanding how to improve medication adherence and long-term survival for young people living with HIV.
The most promising strategies for improving treatment adherence among HIV-infected youth involve patient and caregiver education, self-monitoring, peer support, and telephone follow-up. Consistent with adult adherence interventions,21,22,27,46
multicomponent strategies tended to be most effective in improving poor adherence. A commonly cited reason for nonadherence to medication among youths is “simply forgetting.”29,38
Interventions that include simple treatment regimens with once-daily dosing13
seek to address this barrier to adherence.
However, once-daily dosing provides other challenges in a population with adherence difficulty. For example, missing a once-daily dose means 24 hours without medications, whereas missing 1 dose of twice-daily regimens means only 12 hours uncovered. Hosek and colleagues note that non-adherence relates more to difficulty incorporating the medication regimen into patient lifestyle than to regimen complexity itself.38
Thus, interventions might consider skill building around taking medications during a specific time that is integrated into a routine behavior, such as after brushing one’s teeth or eating breakfast.
Findings suggest that providing DOT, while considered impractical for all youth because of its cost, might be important for selected adolescents infected with HIV,10,32
such as those with active substance use disorders. To date, no studies have examined the use of multidisciplinary treatment teams (eg, teams with case managers, physicians, nurses, psychologists) versus physicians alone in working with HIV-infected youth.47
However, multidisciplinary treatment teams are more successful than physicians alone in providing and implementing successful adherence interventions among adults.27,48
Future research with HIV-infected youth may benefit from investigating intervention delivery mode (eg, team treatment vs individual treatment).
An estimated 2% to 6% of US youth have a depressive disorder, and approximately 15% have elevated depressive symptoms.49,50
Among HIV-infected youth, elevated levels of psychologic distress have been documented, with rates of depressive symptoms ranging from 18% to 45%.15,50
Evidence from studies in adults demonstrates the effectiveness of treating depression as a means of improving adherence.51,52
Findings that depressive symptoms are strongly associated with nonadherence among HIV-infected youth29,32,33,39
suggest that treatments for adolescent depression may assist in improving medication adherence. A recent study demonstrated that treating HIV-infected adults with cognitive behavioral therapy for depression and adherence skill building effectively reduced depression over time and improved medication adherence.53
Limitations bear mention when interpreting review findings. Given the early stage of research in this field, all relevant studies were included in our review, regardless of methodologic rigor. The few studies conducted to date, small sample sizes, and paucity of research on specific subgroups (eg, gay and lesbian youth, racial or ethnic minority youth) limit generalizability. In addition, studies often presented adherence and nonadherence as opposing or opposite constructs. However, findings suggest that distinguishing between and understanding the differences between these concepts may yield valuable insight as to the roles that diverse factors play in adherence and may be especially productive in helping develop new interventions. Thus, differences between adherence and nonadherence should not be reduced but should instead be expanded and each concept thoroughly investigated.
Given the range of complex factors associated with nonadherence, different sets of targeted interventions may be warranted that focus on specific populations of youth (eg, homeless, sexual minorities, substance abusing). Randomized controlled trials are needed that incorporate solid theoretic frames, satisfactory sample sizes, psychometrically sound outcome measures, consistent operationalization of adherence, and better adherence assessment measurements.22
Cost-effectiveness data to assess the practical value of different adherence interventions in the long-term would be beneficial.22,54
Finally, because the psychosocial needs of HIV-infected persons are changing to more closely resemble the needs of the chronically rather than the terminally ill individual,15
investigating how psychosocial issues such as distorted body image, substance use, anxiety, history of childhood sexual abuse, and influence of peer norms relate to antiretroviral adherence may be particularly crucial to promoting long-term survival and quality of life among HIV-infected youth.15–17,55
Secondary HIV prevention interventions54,56
may provide useful means of not only reducing HIV transmission through sexual risk taking but also improving health outcomes through the incorporation of strategies to increase antiretroviral adherence.
This review indicates that more research on adherence among HIV-infected youth, as well as more rigorously evaluated interventions, are needed. Maximizing adherence may not only be fundamental to the well being of HIV-infected youth but may also have a far-reaching and broader impact on public health.12
Nonadherence may lead to drug resistance and cross-resistance that may render HIV treatments ineffective and may be implicated in the emergence of drug-resistant strains of HIV.9,57,58
Consequently, gaining a more thorough and contextualized understanding of factors associated with adherence and nonadherence, including individual demographic, social and psychologic, disease-related, treatment-regimen, and practitioner factors, represents an important step in helping people live longer and in intervening to address infectious disease rates. Further culturally tailored, intervention development research for HIV-infected youth is warranted.