There are ∼1 million people in the United States living with HIV/AIDS, and >50 000 new infections occur each year. With an estimated 13% of all new infections occurring among young people aged 13 to 24 years and an increasing number of perinatally infected youth surviving to adulthood, there is now an increasing need to transition both perinatally and behaviorally infected youth to the adult health care setting. Recently, pediatric providers and professional societies have prioritized the development of transition programs for adolescents with chronic disease to address the many challenges these youth face in the process. Although multiple position papers have called for continuous, coordinated, culturally appropriate, compassionate, family-centered transition programs for youth with special health care needs and have recognized the need for evidence-based models, few data exist on what strategies are most effective. To date, published data on health care transition for HIV-positive youth are limited and include only 2 studies, which considered behaviorally infected youth. In this state-of-the-art review, we discuss the unique transition challenges to consider for this population, including socioeconomic and health insurance status, the special role of the pediatric or adolescent provider as family, stigma and disclosure issues, cognitive development and mental health issues, medication adherence, and sexual, reproductive, and gender health concerns. Future research will need to include the experiences of transition in low-resource settings and examine clinical outcomes and factors that may predict success or failure of the transition process.
There are ∼1 million people in the United States living with HIV/AIDS, and >50 000 new infections are occurring each year.1 Since the beginning of the epidemic nearly 40 000 adolescents have been diagnosed with HIV in the United States, and an estimated 13% percent of all new infections are occurring among young people aged 13 to 24 years.1 According to recent Centers for Disease Control and Prevention estimates, there are >25 000 people aged 13 to 24 years living with HIV in the United States, the vast majority of whom will need to be transitioned to adult care in the next 10 years.2
The demographics of young people living with HIV/AIDS in the United States have changed dramatically during the last 3 decades. A combination of public health interventions has dramatically reduced the incidence of perinatal HIV infections. Widespread routine HIV testing, early prenatal screening, and rescreening during the third trimester have lead to increased identification of HIV infection among pregnant women. Once pregnant women are identified as being infected with HIV, measures can be taken to limit perinatal transmission. These measures include prophylactic and therapeutic antiretroviral use for these women during pregnancy, labor, and immediately after delivery for their infants and avoidance of breastfeeding. Together these have greatly decreased the number of newborns exposed to HIV. Over the past 5 years, an average of <150 infants infected with HIV perinatally have been identified.3 At the same time, with the advent of combination antiretroviral therapy, many youth with perinatally acquired HIV are now surviving to adulthood. Such longevity was never expected in the beginning of the epidemic, and these perinatally infected teenagers now comprise almost one-third of the adolescents living with HIV/AIDS.4 This increase in the population of perinatally infected teenagers has been mirrored by an incidence in behaviorally infected adolescents, primarily in those infected through sexual contact (see Figs 1 and 2).
At this time, the majority of these newly infected adolescents are young men who have sex with men, and Latino and particularly black young men who have sex with men are affected disproportionately.1Figure 3 shows that the majority of HIV infections are occurring among youth of color. Male-to-female transgendered youth also have a particularly high incidence of HIV infection.5 According to the most recent Centers for Disease Control and Prevention data, among youth aged 13 to 19 years the highest rates of new infection are in the southern and southeastern regions of the United States.2Figure 4 highlights this geographic disparity, which is also seen in the 20- to 24-year-old age group. Finally, heterosexual transmission of HIV accounts for ∼30% of the cases in this age group, and the overwhelming majority of patients who contract the infection in this manner are young black and Hispanic/Latina women.1,5
TRANSITION TO ADULT CARE FOR YOUTH LIVING WITH HIV AS A CHRONIC DISEASE
Improvements in supportive pediatric and adolescent medical care and widespread access to combination antiretroviral therapy have lead to an increasing life span for youth living with HIV. For those beginning antiretroviral treatment after 2003, recent estimates predicted a survival time of at least another 40 years beyond initiation of antiretroviral therapy.6 As life expectancy has improved, the medical community has begun to view HIV infection as a chronic disease and treat it accordingly. This increase in survival time and use of the chronic disease model that it has engendered has necessitated that we prepare to transition these HIV-positive adolescents from pediatric/adolescent care to adult care.
Health care transition is defined as the purposeful planned movement of children with special health care needs from child- to adult-centered health care.7 Pediatric providers and professional societies have prioritized the development of transition programs for adolescents with chronic disease to address the many challenges that these youth will face in the process. Although multiple position papers have called for continuous, coordinated, culturally appropriate, compassionate, family-centered transition programs for youth with special health care needs and have recognized the need for evidence-based models, few data exist on what strategies are most effective.7,–,9
We hope that HIV providers will be able to learn the majority of their “transition techniques” from similar programs and data that exist for youth with other chronic diseases. To date, published data on health care transition for HIV-positive youth are limited. Studies thus far have focused mainly on perinatally infected patients; only 2 studies have considered behaviorally infected youth.10,–,15 There are also many unique psychosocial and medical needs of adolescents living with HIV that make transition planning particularly complicated when compared with that for other chronic illnesses.16 For example, one of the barriers to a smooth transition to adult care that is relatively unique for young people living with HIV is concern around stigma and disclosure of one's diagnosis to sexual partners, family, friends, and/or service providers. These challenges are compounded by the fact that providers must consider the 2 distinct populations of those who were perinatally infected versus those who were behaviorally infected. These populations often face similar challenges, but as they prepare to transition to adult care they may have different clinical and psychosocial needs and concerns.10
Cognitive Development and Mental Health
In the pediatric care setting, young people living with HIV, as with many other chronic diseases, are accustomed to an interdisciplinary approach to care or a “1-stop shopping” model in which a patient's medical and psychosocial needs are addressed simultaneously.17 These sorts of coordinated services are less likely to be available when youth transition to adult care. Adolescents and young adults living with HIV, both behaviorally and perinatally infected, have higher rates of cognitive impairment and mental health problems such as anxiety, depression, attention-deficit/hyperactivity disorder, and posttraumatic stress disorder when compared with their HIV-negative counterparts.16,18,–,21 Both youth living with HIV and their pediatric providers have expressed concerns about the fact that adult care models often fragment medical and psychosocial services, which makes it difficult for patients to access appropriate mental health providers. This is an important barrier to transition.11,12,14 In 1 study providers reported concern that patients with mental health and/or substance abuse problems may be lost to care entirely during the transition process.11
Adherence to medications is an obvious challenge for all patients with chronic diseases. In patients living with HIV infection, the consequences of not taking medications as prescribed are more significant than with many other illnesses. Once antiretroviral therapy is begun, current guidelines recommend against interruption of treatment, and >95% adherence is needed to maintain optimal virologic suppression and avoid the development of resistant virus.22,23 Taking medications consistently can be particularly challenging for HIV-positive adolescents. Factors associated with poor adherence in this population include simply forgetting, fears of disclosure, inconsistent daily routine, adverse effects of the medication, and not understanding the need to take medication when one feels well.13,24,–,26 To overcome these challenges, many programs and providers have established elaborate support mechanisms to deal with this challenge. These kinds of supports may not be available when transition to adult care takes place. In a study that followed perinatally infected youth after transition, approximately half of those on medications reported adherence difficulties. The leading reason for this nonadherence was equally split between not taking medication because of social and psychological reasons and not taking it because of lack of insurance.14 It is also clear that depression and substance use are contributors to decreased adherence, and during health care transition these factors may intensify.11,25
Sexual, Reproductive, and Gender Health
For all youth living with special health care needs, issues related to sexual orientation, reproductive health, and gender identity should be addressed while they are adolescents and throughout the health care transition process. This is particularly important for youth living with HIV, because it can be a sexually transmitted disease. The few published data on HIV health care transition raise concerns about sexual health from both provider and patient perspectives. In a study of perinatally infected youth, pediatric providers expressed concerns about the lack of resources in the pediatric setting for appropriate sexual and reproductive health care.13 In their recommendations for improvement of transition and desired characteristics of adult care, both perinatally and behaviorally infected HIV-positive young women included the provision of services and education regarding pregnancy and parenting, which perhaps suggests that this may be an aspect of adult care that is beneficial to the transitioning patient.12,14 It is interesting to note that in a study that interviewed providers from 14 adolescent HIV care sites throughout the country, half of the providers reported that young women who had been pregnant while receiving care at a pediatric or adolescent care site often had the easiest transition to adult care. The informants hypothesized that it was because they had already had the experience of working with another provider during pregnancy and also had increased access to insurance and other entitlements because of their childbearing.11
For some sexual minority and transgendered HIV-positive people, the difficulty in finding an adult provider to care for their HIV infection is compounded by the difficulty in finding a provider who is knowledgeable and understanding of the special requirements of caring for lesbian/gay/bisexual/transgendered/questioning youth.5 Adolescent HIV providers have noted the importance of matching these youth to adult clinics that are lesbian/gay/bisexual/transgender-friendly.11
The subset of transgendered youth who are HIV-positive offers an even greater degree of challenge. These patients often need to also find providers who will not only manage their HIV infection but also be knowledgeable about and willing to manage their gender-affirming hormone therapy and other medications for transgender health in combination with antiretroviral therapy.27
Socioeconomic and Health Insurance Status
Adolescents and young adults, particularly those with any sort of chronic disease, are less likely to have health insurance than those of any other age group.28 In addition, people living with HIV are more likely to experience poverty and lack health insurance when compared with their uninfected counterparts.16 Data have shown that both behaviorally and perinatally infected youth, as well as pediatric and adolescent HIV care providers, find insurance issues to be a significant barrier to the transition process.11,12,14 In 1 study perinatally infected youth expressed concerns about access to quality providers caused by parental insurance changes, whereas in another study of behaviorally infected youth, 20% of the participants specifically reported delays in accessing an adult provider because of difficulty navigating an insurance referral system.12,14 Gaps in health insurance coverage and other economic or transportation barriers may lead to missed appointments during transition, which in turn has been associated with rebound in viral load and clinically significant resistance.29 In addition, some behaviorally infected youth may also experience a “functional” loss of coverage if they are hesitant to access care because of not wanting to disclose their status to a parent or guardian who may be the primary beneficiary of the plan.30
Stigma and Disclosure
It is unfortunate that many people living with HIV experience rejection, violence, discrimination, or other poor treatment as a result of disclosing their HIV diagnosis.16 Concerns about stigma and disclosure may be particularly prominent for youth living with HIV during health care transition. Several studies have specifically documented that perinatally infected youth and their pediatric care providers are concerned about transition to the adult health care environment because they may experience discrimination from providers or other patients. This discrimination is felt to be related to the stigma that is prevalent and directed toward people who acquired HIV through risk behaviors including sexual activity or intravenous drug use.13,14,31 Similar concerns about stigma and fear of consequences of disclosure of diagnosis have been documented in the literature among different populations of behaviorally infected HIV-positive youth including intravenous drug users and men who have sex with men.32,33 Status disclosure is also a concern in this transitional process; behaviorally infected youth and their adolescent providers have reported that they fear that their status will be inadvertently disclosed by forcing them to get their health care in facilities labeled as “infectious disease” clinics. Their pediatric or adolescent HIV care is more likely to afford them a higher degree of anonymity and confidentiality.11,12
The Pediatric Provider as Family
In the limited literature on transition for HIV-positive youth, a common theme that has emerged in several studies is the idea of the pediatric or adolescent care team being considered “family” for many patients, which can make transition a challenging time for both sides of the provider-patient relationship.11,–,14 Many perinatally infected youth describe leaving their pediatric providers as similar to the loss of a family member, because many of them have known the providers for their entire lives. These providers may have been there to support them through critical illnesses and even the deaths of their parents.11,13,14 This same strong attachment can be seen in behaviorally infected youth, particularly among those who have disclosed their diagnosis to few people other than the adolescent care team.12 As with other chronic diseases, most pediatric HIV providers, particularly those who have been long-time providers for perinatally infected youth, recognize that they and/or their institution may no longer be the best provider/place for their patient to continue to receive care but may have difficulty letting patients go.13,34
HIV medical providers, as well as youth living with HIV and their caregivers, have consistently identified communication as a key transition issue. These areas of communication difficulties include patient-provider discussions around the timing and expectations for transition to adult care and provider-provider communication about important aspects of patients' medical histories.11,–,14 Both perinatally and behaviorally infected youth have recommended early discussion of health care transition as a way to improve the process of preparing patients for transition.12,14 Difficulties in communication between adult and pediatric providers can be a challenge for youth living with any chronic disease. These difficulties are often of major consequence for youth living with HIV, who, once transitioned to adult care, do not expect to need or want to be responsible for bringing new providers up to speed on their medical history. They prefer and expect that pediatric and adult providers will do a better job of communicating this information directly to one another.35 For many, retelling their HIV medical history may be particularly difficult because of the trauma associated with HIV infection or diagnosis.12,20 Some perinatally infected youth, who rely heavily on their adult caregivers, have expressed concerns that caregivers should be included more in discussions about transition with pediatric providers and in communication about medical decisions once they are in adult care.13,14
CLINICAL GUIDELINES AND EVIDENCE FOR TRANSITION MODELS
Few published protocols or models for HIV-specific health care transition11,12,14,36 are available to provide guidance to clinicians. Recently, Maturo et al36 described the development of their transition protocol, “Movin' Out,” for behaviorally infected adolescents in an urban, university-based, multidisciplinary clinic. The model uses a 5-phase approach that is initiated at the age of 23 years: (1) discussion begins with the identified client at each appointment; (2) the client meets the adult infectious disease physician in an adolescent clinic; (3) checkup with the adult physician in an adolescent clinic; (4) first appointment in the adult clinic accompanied by the adolescent social worker or peer educator; and (5) 1-year follow-up with the client by the adolescent psychosocial team (see Table 1). Preliminary data from follow-up interviews after at least 2 adult care appointments suggest that early education regarding health care access and site visits to community agencies that offer HIV services may be helpful for youth during the transition process.
Valenzuela et al12 described a transition model that was modified on the basis of qualitative interview data of a similar population. In that model, patients are given the opportunity to visit multiple adult care settings with an adolescent social worker before the age of 24 years and are linked with a specific adult HIV case manager and community mental health provider before transition. Both models begin discussion with the patient about transition at least yearly from the age of 14 years or at the time of enrollment in the clinic.
In another qualitative study, Gilliam et al11 interviewed providers from 14 adolescent HIV clinics across the country. The recurring themes that emerged were generally consistent with those of previously published transition protocols. Fifty percent of the sites preferred to transition patients between 22 and 24 years of age, although several of them preferred to make the decision on an individual basis. Models varied in how adult providers were introduced. For example, in contrast to the models we have described, some programs had patients see an adult provider in the last few years before transition, and then the adult provider would continue to follow them in that clinic space or elsewhere. Six of the 14 clinics had written guidelines or procedures in place for health care transition. Some of these clinics used specific charting tools and/or documentation to assess patient readiness, including a knowledge and skills checklist and the AIDS Education and Training Centers transition workbook. Most clinics continually evaluated the process in some way and attempted to remain in contact with patients during the year after transition. Several providers felt that outcome data regarding health care transition for these youth may be lacking because of difficulty formally tracking patients after transition, and many of them expressed concerns about violating the Health Insurance Portability and Accountability Act with informal follow-up.
Only 2 studies have reported quantitative outcome data relating to health care transition for HIV-positive adolescents.14,15 One study of perinatally infected youth revealed improvement in readiness for transition and decreased anxiety after delivering a personalized intervention.15 Another study of perinatally infected youth (N = 52) followed outcome variables including CD4 count and whether a patient was taking antiretroviral therapy before and after transition.14 This study found no significant difference in change of CD4 count of those who remained in pediatric/adolescent care versus those who transitioned to adult care.
Given the lack of available data on HIV-specific transition, it is not surprising that tools and guidelines for providers are also limited. However, there do exist position papers from several professional societies about health care transition for youth with special health care needs,7,–,9 and the US Department of Health and Human Services has made specific clinical recommendations for health care transition of adolescents and young adults living with HIV (Fig 5).10 The Department of Health and Human Services also recognized the importance of health care transition by approving a quality-of-care measure that required Health Resources and Services Administration/Ryan White providers to discuss health care transition with HIV-positive youth at least yearly starting no later than the age of 17 years. The National Resource Center of the AIDS Education and Training Centers has developed an adolescent transition workbook that may help pediatric and adolescent providers to better prepare their patients for transition. The workbook aims to improve transition readiness by addressing topics including knowledge of health condition, health literacy, medication management, sexual health and family planning, personal social supports and community resources, education and career goals, and legal rights.37
With advances in health care and increasing numbers of new infections among certain populations, more youth living with HIV/AIDS will become adults. For these people, effective health care transition will be an important component of ensuring healthy and productive futures. Although we have discussed health care transition mainly in the United States, it is important to note that there are >2 million children living with HIV/AIDS globally,38 and these children now have increasing access to antiretroviral therapy. Developing countries are beginning to recognize the importance of health care transition for these youth who are now surviving to adulthood in large numbers.39
Although the need for evidence-based HIV-specific health care transition models is clear, future research will need to examine quantitative clinical outcomes such as disease progression and medication adherence as well as qualitative outcomes including patient satisfaction after transition. Factors that predict success or failure of the transition process will also need to be determined. As with other chronic diseases, clinical experience and the few data available support a multidisciplinary, developmental approach that starts early and is monitored with continual evaluation and revision. In this process, special attention needs to be given to the unique challenges that people living with HIV/AIDS face, including stigma and disclosure, discrimination, and the need for nearly perfect medication adherence for successful antiretroviral therapy.
- Accepted May 6, 2011.
- Address correspondence to Nadia Dowshen, MD, 34th Street and Civic Center Boulevard, 11 NW, Suite 10, Room 24, Philadelphia, PA 19104. E-mail:
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
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- Copyright © 2011 by the American Academy of Pediatrics