According to the most recent Centers for Disease Control and Prevention (CDC) surveillance data, there were 56,300 new HIV infections per year in the United States from 2003 to 2006 (Hall et al., 2008
). An estimated 10% to 15% of these new infections occurred in individuals ages 13–24 (CDC, 2008
). Currently, an estimated 19,979 adolescents of the same age group are living with HIV infection (CDC, 2008
). The majority of HIV-infected adolescents receive their medical care in a pediatric or adolescent medical setting. These individuals will soon reach an age when transition to adult-centered medical services is expected.
Health care transition (HCT) is defined as the purposeful planned movement of adolescents and young adults with special health care needs from child-centered to adult-centered health care (Blum, Garrell, Hodgman, & Slap, 1993
). Adolescents with special health care needs and chronic medical conditions typically transition from the care of their pediatric or adolescent care providers between the ages of 18 and 24 years. Historically, the transition of adolescents with disabilities and special health care needs from child-centered health care to adult-centered health care has been challenging (Blum et al., 1993
; Reiss, Gibson, & Walker, 2005
; Rosen, Blum, Britto, Sawyer, & Siegal, 2003
). Obstacles to transition include poor access to health insurance (Futterman, 2005
; Reiss et al., 2005
), minimal case management in adult medical practices (Wojciechowski, Hurtig, & Dorn, 2002
), and a lack of communication between pediatric and adult providers (Reiss et al., 2005
). Additionally, adult providers may be reticent to accept responsibility for the care of these adolescents with multifaceted medical and psychosocial needs (McDonagh, 2005
; Peter, Forke, Ginsburg, & Schwarz, 2009
; Reiss et al., 2005
). Peter et al. (2009)
identified additional concerns of adult providers related to a lack of adolescent training, lack of family involvement and difficulty meeting families’ expectations, difficulty facing disability and end-of-life issues early in the provider–patient relationship, and financial pressures limiting visit time.
Adolescents with a chronic disease often have concurrent developmental difficulties, psychosocial delays, and concerns about separating from their pediatric providers, which may further complicate the transition process (Rosen et al., 2003
). The HCT for HIV-infected adolescents may also be complicated by stigma, discrimination, marginalization, and social isolation that may hinder adolescents from seeking the support of unfamiliar providers (AIDS Education and Training Centers National Resource Center [AETC NRC], 2006
; HIV/AIDS Bureau, Health Resources and Services Administration, 1999
). In addition, adolescents with HIV may have experienced parental illness and loss that, combined with other psychosocial stressors, can make HCT an even more complex process (Brown, Lourie, & Pao, 2000
Several professional medical associations, including the Society of Adolescent Medicine, the American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, and American Society of Internal Medicine, have addressed the need for evidence-based practice models of transition for young adults with special health care needs (Blum, Hirsch, Kastner, Quint, & Sandler, 2002
; Rosen et al., 2003
). These position papers call for programs that are family-centered, continuous, comprehensive, coordinated, compassionate, culturally competent, and developmentally appropriate, terms that are now consistently seen throughout the HCT literature.
Before beginning our project, we identified only one study in the United States that analyzed transition from child-centered care to adult care for HIV-infected adolescents (Weiner, Zobel, Battles, & Ryder, 2007
).Weiner et al. (2007)
described an intervention study with a sample of HIV-infected adolescents enrolled in a National Institutes of Health Clinical Research Program that planned to close within the year. Readiness to transition and level of anxiety associated with transition were measured in a sample of adolescents before and after an individually designed intervention. A clinic social worker or medical provider delivered the interventions. Interviews were also conducted with transitioning adolescents and family representatives to identify barriers to transition. Commonly reported barriers were identified as follows: (a) the need for a physician, social worker, and pharmacy in the home community; (b) a lack of health insurance; (c) insufficient funds to cover out-of-pocket expenses; and (d) knowledge deficits related to HIV disease and medications. As hypothesized, poor readiness scores were associated with increased anxiety levels. After the individualized intervention, all participants improved their readiness to transition scores and their levels of anxiety decreased. It was suggested that social workers were well suited to address the psychosocial needs, emotional barriers, and resistance to transition, as well as to assist in resource acquisition for this unique population (Weiner et al., 2007
Recently, two additional publications were identified that focused on the transition of adolescents with HIV disease from child-centered care to adult care. Vijayan, Benin, Wagner, Romano, and Andiman (2008)
described the transition experience from the perspective of a group of perinatally infected patients, their parents, and the pediatric providers. Their purposive sample included 18 adolescent patients (ages 12–24 years), 15 of their principal guardians, and nine pediatric health care providers from the Yale Pediatric AIDS Care Program in New Haven, Connecticut. Open-ended interviews were conducted with all participants between November 2005 and April 2006. Data were organized around the challenges of caring for adolescents with HIV and potential barriers to transitioning adolescents to internal medicine-based care. Challenges to care were identified as poor adherence to medication regimens, adolescent sexuality, and disorganized social environments. Potential barriers to transitioning these adolescents included families’ negative perceptions of and experiences with stigma of HIV disease, perceived and actual lack of autonomy, and difficulty letting go of relationships that were frequently described as familial. Stigma associated with an HIV diagnosis was identified as a component of adherence to medications, sexuality, disclosure of HIV status, and difficulty trusting a new health care provider. The authors suggested that increased dialogue between pediatric and adult HIV care providers, individualized transition plans for patients and families, and mechanisms to address stigma and autonomy would ultimately improve outcomes after transition to adult care.
A second recent publication described the development of a protocol for transitioning adolescents with HIV infection to adult care (Maturo et al., 2010). The protocol was developed by a multidisciplinary team of adolescent HIV-care providers at a university-based clinic in Miami that traditionally serves low-income and underserved populations. The Specialty Adolescent Clinic (SAC) provides specialty and primary care to patients ages 15 to 25 years who have been diagnosed with HIV disease, both perinatally and behaviorally. The SAC is an Adolescent Trials Network (ATN) clinic and was one of the sites included in our study.
Maturo et al. (2010) described their “Movin’ Out” transition model. Their model addressed two primary issues: (a) the number of adolescents currently in care with pediatric or adolescent providers at SAC admitted to adult units when hospitalized, and (b) the high attrition rate for adolescents after they transferred to adult services. The need to develop an original protocol was identified after a search of the literature that revealed no transition models specific to adolescents with HIV infection. The development of this protocol was an iterative process, which now consists of five phases: (a) discussing transition with clients at age 23 who were pre-identified during team meetings, (b) introducing the client at age 24 to the adult infectious disease physician at SAC, (c) making the next 3-month routine clinic appointment with the adult infectious disease physician at SAC, (d) having a SAC social worker or peer educator accompany the client to the first appointment at the adult clinic with the adult infectious disease physician, and (e) providing a follow-up session at 1 year between the client and SAC psychosocial team. Follow-up revealed certain barriers to transition that continued to exist. Adult providers lack knowledge about public assistance programs for adolescents. The barriers that were more directly related to adolescent clients included transportation, employment, family support, food, and housing.
One explanation for the lack of evidence-based transition models is that the need to prepare and transfer perinatally infected children and adolescents to adult care is a relatively new phenomenon. Before the mid-1990s, when multidrug antiretroviral therapy (ART) emerged as the standard of care, perinatally infected children usually did not survive to adulthood. A retrospective study of 1,142 perinatally infected children born between November 1980 and December 1997 in the Italian Register of HIV Infection in Children and the Italian National AIDS registry calculated risk of death from HIV-related illnesses according to the type of drug therapy received (de Martino et al., 2000
). The researchers reported that the adjusted risk of death decreased by 70% in a group receiving triple-drug therapy after 1996 compared with that receiving single-drug therapy before 1996. A recent report from the Antiretroviral Therapy Cohort Collaboration (2008)
presented the results of a meta-analysis of 14 cohorts of HIV-infected adolescents in the United States, Canada, and Europe. Considering adolescents who began initial treatment regimens between the years 2003 and 2005, a 20-year-old starting ART could expect to live an additional 43 years.
The need to address this phenomenon was recognized by the Department of Health and Human Services (DHHS). The November 2008 DHHS Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents
contained the first discussion of transitioning adolescents with HIV to the adult care setting (Panel on Antiretroviral Guidelines for Adults and Adolescents, 2008
). The DHHS recommendations to promote successful transition are listed in .
Department of Health and Human Services Recommendations to Promote Successful Transition
The paucity of research examining the transition of perinatally infected adolescents combined with increasing numbers of behaviorally infected adolescents magnifies the need to examine the transition process in these populations. Further understanding about how HCT affects both perinatally infected and behaviorally infected adolescents may ultimately allow providers to improve care for this vulnerable population. The aim of this research was to begin a process to ensure that HCT is a purposeful, well planned, and expected experience for adolescents with HIV disease. The purpose of this qualitative study was to describe the characteristics and current practices of the ATN for HIV/AIDS Interventions clinics related to transition of HIV-infected adolescents to adult medical care.