As a result of tremendous scientific research and therapeutic developments, HIV has evolved from a terminal diagnosis to a treatable, chronic condition. Although there have been adolescents and “emerging adults” with HIV since the early days of the epidemic, the notion of an extended life expectancy for youth with HIV and the need to transfer the care of adolescents from pediatric to adult HIV providers is a concept that developed largely within the past 10 years.
Incidence of HIV in Youth
In 2014, persons between ages 13 and 24 years comprised approximately 22% of all new HIV diagnoses in the United States.1 People who identify as LGBT (lesbian, gay, bisexual, and transgender) and people who are black or Hispanic are disproportionately represented among new cases. HIV diagnoses among black and Hispanic gay and bisexual males age 13 to 24 years increased approximately 87% from 2005 to 2014.1 Although the increase in HIV diagnoses among these groups is disheartening, patients with HIV on combination antiretroviral therapy (ART) in high-income countries have experienced a significant increase in life expectancy.2
Adolescents and emerging adults with HIV acquired the infection either at birth (perinatally) or horizontally via intravenous drug use or sex. A small number of cases result from in-utero transmission. As a result of increased HIV testing of pregnant women since 2004, effective combination ART for mothers with HIV and 4 to 6 weeks of ART and avoidance of breastfeeding in exposed infants, perinatal transmission of HIV has declined sharply and now can be as low as 1%.3 Compared to 1,650 new cases of perinatal HIV infection in 1991 at the height of the epidemic, only 151 babies were born with HIV in 2009 in the US, and efforts are ongoing to eliminate perinatal transmission of HIV.3,4 Most recent estimates indicate that more than 9,000 people age 13 years and older are currently living in the US with perinatally acquired HIV.3
There are important distinctions between youth with perinatally acquired versus horizontally acquired HIV. Perinatally infected patients often have more advanced disease than horizontally infected patients. They are more likely to have resistant virus and require a more complex ART regimen.5 Adolescents and emerging adults with HIV are the least likely of any age group to be linked to care, which is defined as visiting a health care provider within 90 days of learning their HIV status.1 Retention in care and viral suppression are also quite low in this age group. Among people age 18 to 24 years living with HIV in 2012 in the US, only 21% had been prescribed ART and only 16% were virally suppressed (HIV viral load <200 copies/mL).1 The Reaching for Excellence in Adolescent Care and Health Project, which assessed viral load and CD4 counts in 154 adolescents with HIV in 13 US cities, revealed that only 50 participants (32.5%) had early and sustained viral suppression on highly active ART.6 High rates of nonadherence were found. Participants cited forgetfulness, not having medications with them, and change in daily routine as reasons for nonadherence.6
Barriers to Care
Several unique and challenging aspects of HIV as a chronic condition create barriers to successful and sustained HIV care in adolescents and emerging adults. Perceived and actual stigma continue to be faced by patients with HIV and their families. Stigma can hinder disclosure of status, adherence with medication, attendance at appointments, and employment of strategies that prevent HIV transmission to others. Discrimination and homophobia may discourage some youth with HIV from seeking HIV testing and treatment.1 Potential barriers to HIV care in adolescents and emerging adults also include comorbid mental health conditions, substance use, lack of social and family support, behavior/conduct problems, and neurocognitive dysfunction, which can manifest as learning and memory deficits.7,8 Health care providers should attempt to identify neurocognitive dysfunction to determine if their patient qualifies for school accommodations or an Individualized Education Program.9 Additionally, people with HIV are more likely to face economic hardships than those who are uninfected and tend to be underinsured relative to their peers.10 Further confounding possible sexual exploration in adolescence, the sexual transmission of HIV complicates relationships, physical intimacy, and family planning.
Mental Health in Youth With HIV
As psychiatric disorders are more likely to emerge during adolescence, mental health is an important facet of caring for youth with HIV.11 Adolescents and emerging adults with perinatally acquired HIV are disproportionately affected by psychiatric illness compared to the general population.11,12 In part, this may be related to daily stress from social and environmental factors, such as poverty, neighborhood violence, and HIV-related stigma. Additionally, more than 50% of people with perinatally acquired HIV have lost a family member to HIV or AIDS.12 In a study of 172 youth age 11 to 24 years with perinatally acquired HIV, 48% carried a diagnosis of a psychiatric illness.5 Anxiety, depression, and behavioral disorders, such as attention-deficit/hyperactivity disorder, are frequently seen in adolescents with perinatally acquired HIV.12 Posttraumatic stress symptoms are also often present in youth with HIV. In a study of 30 people with HIV age 18 to 24 years, 10 of the participants described symptoms compatible with posttraumatic stress disorder in response to receiving a diagnosis of HIV.13
The first year after receiving the diagnosis is often fraught with stress related to disclosure and confidentiality, medications, clinic appointments, and HIV-related stigma.14 HIV providers should familiarize themselves with disclosure and confidentiality laws related to HIV in their state and be prepared to support their patients with these challenging issues.9 Mental health difficulties can create barriers to medication adherence and successful treatment. Furthermore, poor ART adherence and consequent viral rebound can increase the odds of HIV transmission to others, which may have important public health consequences.11
Transfer of Care to Adult Providers
As with many other chronic conditions that require transfer of care from pediatric to adult providers, adolescents and emerging adults with HIV are often reluctant to leave their pediatric providers.15 Pediatric HIV providers and their staff have often been caring for perinatally infected patients since they were young and are considered by some to be “part of the family.”16 Additionally, experiences with or fears of HIV-related stigma may foster a reluctance to meet new providers.17 Also, not unlike adolescents with other chronic illnesses, adolescents with HIV often struggle with medication adherence, which may prompt consideration of simpler drug regimens or administration schedules that are compatible with school or work.15 In some adolescents, fear of disclosure if seen taking medication by peers leads to poor adherence,17 which may encourage providers to choose a regimen that requires medication be taken only 2 rather than 3 times per day.
Many strategies to ease transfer of care for adolescents and emerging adults with HIV have been attempted. Weiner et al.18 administered a transition readiness scale to youth at two time points approximately 7 months apart. Identifying barriers to transition planning, such as finding a new physician, improving knowledge of HIV transmission and treatment, and naming medications and their doses, led to improvement in readiness for transfer of care and decreased transfer-related anxiety. Of note, disease severity as measured by CD4 count and viral load was not correlated with readiness for transfer of care. In contrast, Fair et al.19 assessed the perceptions of health care providers and found that viral suppression, higher CD4 count, adherence to medications and clinic visits, and demonstration of adolescent responsibility were markers of successful transfer of care. In another study, 19 health care providers in North Carolina identified that the best transition planning practices were encouraging medical independence among adolescents, close communication between adult and pediatric providers, addressing insurance changes and other social services, and creating a separate clinic for adolescents with HIV.20 Providers from the Adolescent Trial Network for HIV/AIDS Interventions were interviewed regarding transfer of care to adult providers. Although there was a lack of consensus, several providers employed a formalized process with a collaborative and multidisciplinary transition team based on knowledge of adolescent developmental theory. Some sites had formalized documentation related to transition planning, including a checklist of knowledge and skills to be obtained prior to transition. Fifty percent of the sites transferred care between ages 22 and 24 years.21
One site in particular developed a 5-phase transition planning protocol for horizontally infected youth that begins with (1) discussion of transition planning by age 23 years, (2) meeting the adult provider in the adolescent clinic, (3) a medical appointment with the adult provider in the adolescent clinic, (4) a medical appointment in the adult clinic accompanied by a social worker or peer advocate from the adolescent team, and (5) a 1-year post-transfer of care follow-up with the patient by the adolescent team.22 Outcomes from 38 people with HIV participating in this transition planning protocol were assessed. Nearly half of the participants successfully transferred care to adult providers. Relocation, disengagement from care, lost to follow-up, and transfer of care to obstetrics were among the reasons for failure to transfer care. Of note, adherence, substance use, mental health issues, and pregnancy/childrearing were not associated with failure to transfer care.23
The New York State Department of Health AIDS Institute has developed guidelines for transition planning for adolescents and emerging adults with HIV.24 In addition to clear communication between adult and pediatric providers, early transition planning using a multidisciplinary team approach is best. The guidelines emphasize that the adolescent should develop knowledge of his or her disease and its management, skills related to navigating care in the adult setting, and goals for a healthy future. A written transition plan should begin at least 3 years before the transfer of care and should be updated annually.24 Many of the parents and/or guardians of adolescents with HIV and the adolescents themselves have recommended that the transition planning process start early, provide specific knowledge of the transition planning process, and involve meeting the adult provider prior to the official transfer of care.16,25 Also, caregivers suggested that the transition planning approach should be individualized to each adolescent.16
Notwithstanding efforts to ease the transition planning process and follow the advice from parents/guardians and adolescents, there are current realities for many adult HIV care sites that providers and adolescents will likely face. Whereas pediatric HIV care teams are often multidisciplinary and include case management and mental health practitioners, adult HIV care may be more fragmented and nonmedical services may be more challenging to navigate.10 Integration of medical care, mental health, and social support services into one location should be a goal of a multidisciplinary adult HIV team accepting referrals from pediatric HIV providers.24 Obstetric and gynecological services should also be available. Additionally, adults with HIV may not have access to the same assistance programs that are available to adolescents with HIV.15 Advanced planning for insurance issues and medication coverage is critical to avoid gaps in treatment. Although more challenging in a fragmented care setting with potential gaps in coverage, adherence should be closely monitored by adult HIV providers because suboptimal viral suppression can lead to viral rebound and worsening drug resistance. Unfortunately, supports for adherence may be limited in adult care settings.26
Adolescents and emerging adults with HIV who have transferred care to adult providers identified increased independence and control as benefits of transferring care;27,28 however, some also reported a sense of loss after leaving their pediatric team. They considered the process particularly beneficial if the adult providers were introduced early on within the pediatric clinic environment.27 Despite the increased sense of independence, 45% of 59 youth who had transferred care found the process more difficult than expected. Troublingly, there was a significant decline in CD4 count after transition, which indicates worsening immune function.29 The study participants recommended improved communication between providers, an individualized transition planning approach, and provider education related to adolescent developmental and psychosocial issues. Another study of outcomes after transition of care revealed that emerging adults newly transferred to an adult HIV clinic had lower rates of viral suppression and higher rates of viral rebound and loss to follow-up compared with matched adults with HIV.30
Adult providers who see adolescents and emerging adults with HIV who have transferred care from pediatric providers should acknowledge that the transition process will continue even after establishing care with an adult clinic. Health and life-management skills are still developing. If possible, adolescents and emerging adults may benefit from continued case management and peer mentoring. Additional research on transfer of care outcomes may shed light on how the transition planning process can optimally prepare patients and providers and also identify the patients at highest risk for falling out of care. HIV has many unique challenges and opportunities that distinguish it from other chronic diseases. The best approach for adolescents and emerging adults transferring to adult HIV care will embrace those challenges and opportunities in sensitive, collaborative, and creative ways.
Future research into transition planning for adolescents and emerging adults with HIV should further characterize the unique needs of both horizontally infected and perinatally infected youth. These two groups have disparate medical and psychosocial needs likely relevant to transition planning. Research should also continue to investigate outcomes after transfer of care, including retention in care and viral suppression. Psychosocial outcomes, such as gaps in insurance, housing, and employment, should be assessed after transfer as well. The role of case management and social work in the post-transfer period should be evaluated as a potential strategy to improve outcomes.
- Centers for Disease Control and Prevention. HIV among youth. https://www.cdc.gov/hiv/group/age/youth. Accessed April 22, 2017.
- The Antiretroviral Therapy Cohort Collaboration. Life expectancy of individuals on combination antiretroviral therapy in high-income countries: a collaborative analysis of 14 cohort studies. Lancet. 2008;372(9635):293–299. doi:10.1016/S0140-6736(08)61113-7 [CrossRef].
- Centers for Disease Control and Prevention. HIV among pregnant women, infants and children. https://www.cdc.gov/hiv/group/gender/pregnantwomen/index.html. Accessed April 22, 2017.
- Nesheim S, Taylor A, Lampe MA, et al. A framework for the elimination of perinatal transmission of HIV in the United States. Pediatrics. 2012;130(4):738–744. doi:10.1542/peds.2012-0194 [CrossRef].
- Koenig LJ, Nesheim S, Abramowitz S. Adolescents with perinatally acquired HIV: emerging behavioral and health needs for long-term survivors. Curr Opin Obstet Gynecol. 2011;23(5):321–327. doi:10.1097/GCO.0b013e32834a581b [CrossRef].
- Ding H, Wilson CM, Modjarrad K, McGwin G Jr, Tang J, Vermund SH. Predictors of suboptimal virologic response to highly active antiretroviral therapy among human immunodeficiency virus-infected adolescents. Analyses of the Reaching for Excellence in Adolescent Care and Health (REACH) Project. Arch Pediatr Adolesc Med. 2009;163(12):1100–1105. doi:10.1001/archpediatrics.2009.204 [CrossRef].
- Zanoni BC, Mayer KH. The adolescent and young adult HIV cascade of care in the United States: exaggerated health disparities. AIDS Patient Care STDs. 2014;28(3):128–135. doi:10.1089/apc.2013.0345 [CrossRef].
- Nichols SL, Chernoff MC, Malee K, et al. Learning and memory in children and adolescents with perinatal HIV infection and perinatal HIV exposure. Pediatr Infect Dis J. 2016;35(6):649–654. doi:10.1097/INF.0000000000001131 [CrossRef].
- AIDS Education and Training Center Program. Common legal issues and concerns of adolescents with HIV: a guide for clinicians. https://www.aidsetc.org/resource/common-legal-issues-and-concerns-adolescents-hiv-guide-clinicians. Accessed April 22, 2017.
- Cervia JS. Easing the transition of HIV-infected adolescents to adult care. AIDS Patient Care STDs. 2013;27(12):692–696. doi:10.1089/apc.2013.0253 [CrossRef].
- Mellins CA, Brackis-Cott E, Dolezal C, Abrams EJ. Psychiatric disorders in youth with perinatally acquired human immunodeficiency virus infection. Pediatr Infect Dis J. 2006;25(5):432–437. doi:10.1097/01.inf.0000217372.10385.2a [CrossRef].
- Mellins CA, Brackis-Cott E, Leu C-S, et al. Rates and types of psychiatric disorders in perinatally human immunodeficiency virus-infected youth and seroreverters. J Child Psychol Psychiatry. 2009;50(9):1131–1138. doi:10.1111/j.1469-7610.2009.02069.x [CrossRef].
- Radcliffe J, Fleisher L, Hawkins LA, et al. Posttraumatic stress and trauma history of adolescents and young adults with HIV. AIDS Patient Care STDs. 2007;21(7):501–508. doi:10.1089/apc.2006.0144 [CrossRef].
- Hosek SG, Harper GW, Lemos D, Martinez J. An ecological model of stressors experienced by youth newly diagnosed with HIV. J HIV AIDS Prev Child Youth. 2008;9(2):192–218. doi:10.1080/15538340902824118 [CrossRef].
- Boudreau ME, Fisher CM. Providing effective medical and case management services to HIV-infected youth preparing to transition to adult care. J Assoc Nurses AIDS Care. 2012;23(4):318–328. doi:10.1016/j.jana.2011.06.003 [CrossRef].
- Fair CD, Sullivan K, Dizney R, Stackpole A. “It's like losing a part of my family”: transition expectations of adolescents living with perinatally acquired HIV and their guardians. AIDS Patient Care STDs. 2012;26(7):423–429. doi:10.1089/apc.2012.0041 [CrossRef].
- Vijayan T, Benin AL, Wagner K, Romano S, Andiman WA. We never thought this would happen: transitioning care of adolescents with perinatally acquired HIV infection from pediatrics to internal medicine. AIDS Care. 2009;21(10):1222–1229. doi:10.1080/09540120902730054 [CrossRef].
- Weiner LS, Zobel M, Battles H, Ryder C. Transition from a pediatric HIV intramural clinical research program to adolescent and adult community-based care services: assessing transition readiness. Soc Work Health Care. 2007;46(1):1–19. doi:10.1300/J010v46n02_01 [CrossRef].
- Fair CD, Sullivan K, Gatto A. Indicators of transition success for youth living with HIV: perspectives of pediatric and adult infectious disease care providers. AIDS Care. 2011;23(8)965–970. doi:10.1080/09540121.2010.542449 [CrossRef].
- Fair CD, Sullivan K, Gatto A. Best practices in transitioning youth with HIV: perspectives of pediatric and adult infectious disease care providers. Psychol Health Med. 2010;15(5):515–527. doi:10.1080/13548506.2010.493944 [CrossRef].
- Gilliam PP, Ellen JM, Leonard L, Kinsman S, Jevitt CM, Straub DM. Transition of adolescents with HIV to adult care: characteristics and current practices of the adolescent trials network for HIV/AIDS interventions. J Assoc Nurses AIDS Care. 2011;22(4):283–294. doi:10.1016/j.jana.2010.04.003 [CrossRef].
- Maturo D, Powell A, Major-Wilson H, Sanchez K, De Santis JP, Friedman LB. Development of a protocol for transitioning adolescents with HIV infection to adult care. J Pediatr Health Care. 2011;25(1):16–23. doi:10.1016/j.pedhc.2009.12.005 [CrossRef].
- Maturo D, Powell A, Major-Wilson H, Sanchez K, De Santis JP, Friedman LB. Transitioning adolescents and young adults with HIV infection to adult care: pilot testing the “Movin' Out” transitioning protocol. J Pediatr Nurs. 2015;30(5):e29–e35. doi:10.1016/j.pedn.2015.06.013 [CrossRef].
- Johns Hopkins University School of MedicineDivision of Infectious Diseases on behalf of the New York State Department of Health AIDS Institute. Transition to adult care guideline. Clinical Guidelines Program. https://www.hivguidelines.org/adolescent-hiv-care/transitioning-to-adult-care/#tab_0. Accessed April 22, 2017.
- Sharma N, Willen E, Garcia A, Sharma TS. Attitudes toward transitioning in youth with perinatally acquired HIV and their family caregivers. J Assoc Nurses AIDS Care. 2014;25(2):168–175. doi:10.1016/j.jana.2013.01.007 [CrossRef].
- Dowshen N, D'Angelo L. Health care transition for youth living with HIV/AIDS. Pediatrics. 2011;128:762–771. doi:10.1542/peds.2011-0068 [CrossRef].
- Miles K, Edwards S, Clapson M. Transition from paediatric to adult services experiences of HIV-positive adolescents. AIDS Care. 2004;16(3):305–314. doi:10.1080/09540120410001665312 [CrossRef].
- Bundock H, Fidler S, Clarke S, et al. Crossing the divide: transition care services for young people with HIV-their views. AIDS Patient Care STDs. 2011;25(8):465–473. doi:10.1089/apc.2010.0279 [CrossRef].
- Wiener LS, Kohrt BA, Battles HB, Pao M. The HIV experience: youth identified barriers for transitioning from pediatric to adult care. J Pediatr Psychol. 2011;36(2):141–154. doi:10.1093/jpepsy/jsp129 [CrossRef].
- Ryscavage PA, Anderson EJ, Sutton SH, Reddy S, Taiwo B. Clinical outcomes of adolescents and young adults in adult HIV care. J Acquir Immune Defic Syndr. 2011;58:193–197. doi:10.1097/QAI.0b013e31822d7564 [CrossRef].