Article

1. Transition of Adolescents With HIV to Adult
Care: Characteristics and Current Practices
of the Adolescent Trials Network for HIV/AIDS
Interventions
Patricia P. Gilliam, PhD, MEd, NP
Jonathan M. Ellen, MD
Lori Leonard, ScD
Sara Kinsman, MD, PhD
Cecilia M. Jevitt, CNM, PhD
Diane M. Straub, MD, MPH
The transition process from pediatric to adult Key words: adolescent, AIDS, developmental, HIV,
health care for adolescents with chronic diseases is transition
always challenging and can be even more so for
adolescents with HIV disease. The purpose of this According to the most recent Centers for Disease
study was to describe characteristics and current Control and Prevention (CDC) surveillance data,
practices surrounding the transition of adolescents there were 56,300 new HIV infections per year in
from the clinics of the Adolescent Trials Network for
HIV/AIDS Interventions to adult medical care. This Patricia P. Gilliam, PhD, MEd, NP, is a Nurse Practitioner,
report focuses on the processes of transition, St. Joseph’s Hospital Tampa Care Clinic, Tampa, Florida,
perceived barriers and facilitators, and anecdotal USA. Jonathan M. Ellen, MD, is a Professor of pediatrics,
reports of successes and failures. Practice models Deputy Chief of Adolescent Medicine, Johns Hopkins
used to assist adolescents during transition to adult University College of Medicine, Baltimore, Maryland,
medical care are described. Interviews were con- USA. Lori Leonard, ScD, is an Associate Professor,
ducted with 19 key informants from 14 Adolescent Department of Health, Behavior & Society, Johns Hopkins
Trials Network clinics. Findings revealed no consis- University School of Public Health, Baltimore, Maryland,
tent definition of ‘‘successful’’ transition, little USA. Sara Kinsman, MD, PhD, is an Assistant Professor of
consensus among the sites regarding specific elements Clinical Pediatrics, Division of Adolescent Medicine, The
Children’s Hospital of Philadelphia, Philadelphia, Penn-
of a transition program, and a lack of mechanisms to
sylvania, USA. Cecilia M. Jevitt, CNM, PhD, is an Asso-
assess outcomes. Sites that viewed transition as
ciate Professor, Midwifery & Nursing, University of
a process rather than an event consistently described South Florida Colleges of Nursing & Medicine, Tampa,
more structured program elements. Florida, USA. Diane M. Straub, MD, MPH, is an Associate
(Journal of the Association of Nurses in AIDS Care, Professor of pediatrics, Chief, Division of Adolescent
22, 283-294) Copyright Ó 2011 Association of Medicine, University of South Florida College of Medi-
cine, Tampa, Florida, USA; and the Adolescent Trials
Nurses in AIDS Care
Network for HIV/AIDS Interventions.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 22, No. 4, July/August 2011, 283-294
doi:10.1016/j.jana.2010.04.003
Copyright Ó 2011 Association of Nurses in AIDS Care

2. 284 JANAC Vol. 22, No. 4, July/August 2011
the United States from 2003 to 2006 (Hall et al., tion, and social isolation that may hinder adolescents
2008). An estimated 10% to 15% of these new infec- from seeking the support of unfamiliar providers
tions occurred in individuals ages 13–24 (CDC, (AIDS Education and Training Centers National
2008). Currently, an estimated 19,979 adolescents Resource Center [AETC NRC], 2006; HIV/AIDS
of the same age group are living with HIV infection Bureau, Health Resources and Services
(CDC, 2008). The majority of HIV-infected adoles- Administration, 1999). In addition, adolescents with
cents receive their medical care in a pediatric or HIV may have experienced parental illness and loss
adolescent medical setting. These individuals will that, combined with other psychosocial stressors,
soon reach an age when transition to adult-centered can make HCT an even more complex process
medical services is expected. (Brown, Lourie, & Pao, 2000).
Health care transition (HCT) is defined as the Several professional medical associations,
purposeful planned movement of adolescents and including the Society of Adolescent Medicine, the
young adults with special health care needs from American Academy of Pediatrics, American
child-centered to adult-centered health care (Blum, Academy of Family Physicians, American College
Garrell, Hodgman, & Slap, 1993). Adolescents with of Physicians, and American Society of Internal
special health care needs and chronic medical condi- Medicine, have addressed the need for evidence-
tions typically transition from the care of their pedi- based practice models of transition for young adults
atric or adolescent care providers between the ages with special health care needs (Blum, Hirsch,
of 18 and 24 years. Historically, the transition of Kastner, Quint, & Sandler, 2002; Rosen et al.,
adolescents with disabilities and special health care 2003). These position papers call for programs that
needs from child-centered health care to adult- are family-centered, continuous, comprehensive,
centered health care has been challenging (Blum coordinated, compassionate, culturally competent,
et al., 1993; Reiss, Gibson, & Walker, 2005; Rosen, and developmentally appropriate, terms that are
Blum, Britto, Sawyer, & Siegal, 2003). Obstacles to now consistently seen throughout the HCT literature.
transition include poor access to health insurance Before beginning our project, we identified only
(Futterman, 2005; Reiss et al., 2005), minimal case one study in the United States that analyzed transition
management in adult medical practices from child-centered care to adult care for HIV-
(Wojciechowski, Hurtig, & Dorn, 2002), and a lack infected adolescents (Weiner, Zobel, Battles, &
of communication between pediatric and adult Ryder, 2007). Weiner et al. (2007) described an inter-
providers (Reiss et al., 2005). Additionally, adult vention study with a sample of HIV-infected adoles-
providers may be reticent to accept responsibility cents enrolled in a National Institutes of Health
for the care of these adolescents with multifaceted Clinical Research Program that planned to close
medical and psychosocial needs (McDonagh, 2005; within the year. Readiness to transition and level of
Peter, Forke, Ginsburg, & Schwarz, 2009; Reiss anxiety associated with transition were measured in
et al., 2005). Peter et al. (2009) identified additional a sample of adolescents before and after an individu-
concerns of adult providers related to a lack of ally designed intervention. A clinic social worker or
adolescent training, lack of family involvement and medical provider delivered the interventions. Inter-
difficulty meeting families’ expectations, difficulty views were also conducted with transitioning adoles-
facing disability and end-of-life issues early in the cents and family representatives to identify barriers to
provider–patient relationship, and financial pressures transition. Commonly reported barriers were identi-
limiting visit time. fied as follows: (a) the need for a physician, social
Adolescents with a chronic disease often have worker, and pharmacy in the home community; (b)
concurrent developmental difficulties, psychosocial a lack of health insurance; (c) insufficient funds to
delays, and concerns about separating from their cover out-of-pocket expenses; and (d) knowledge
pediatric providers, which may further complicate deficits related to HIV disease and medications. As
the transition process (Rosen et al., 2003). The hypothesized, poor readiness scores were associated
HCT for HIV-infected adolescents may also be with increased anxiety levels. After the individual-
complicated by stigma, discrimination, marginaliza- ized intervention, all participants improved their

3. Gilliam et al. / Adolescent Transition 285
readiness to transition scores and their levels of specialty and primary care to patients ages 15 to 25
anxiety decreased. It was suggested that social years who have been diagnosed with HIV disease,
workers were well suited to address the psychosocial both perinatally and behaviorally. The SAC is an
needs, emotional barriers, and resistance to transition, Adolescent Trials Network (ATN) clinic and was
as well as to assist in resource acquisition for this one of the sites included in our study.
unique population (Weiner et al., 2007). Maturo et al. (2010) described their ‘‘Movin’ Out’’
Recently, two additional publications were identi- transition model. Their model addressed two primary
fied that focused on the transition of adolescents issues: (a) the number of adolescents currently in care
with HIV disease from child-centered care to adult with pediatric or adolescent providers at SAC
care. Vijayan, Benin, Wagner, Romano, and Andiman admitted to adult units when hospitalized, and (b)
(2008) described the transition experience from the the high attrition rate for adolescents after they trans-
perspective of a group of perinatally infected patients, ferred to adult services. The need to develop an orig-
their parents, and the pediatric providers. Their inal protocol was identified after a search of the
purposive sample included 18 adolescent patients literature that revealed no transition models specific
(ages 12-24 years), 15 of their principal guardians, to adolescents with HIV infection. The development
and nine pediatric health care providers from the of this protocol was an iterative process, which now
Yale Pediatric AIDS Care Program in New Haven, consists of five phases: (a) discussing transition
Connecticut. Open-ended interviews were conducted with clients at age 23 who were pre-identified during
with all participants between November 2005 and team meetings, (b) introducing the client at age 24 to
April 2006. Data were organized around the chal- the adult infectious disease physician at SAC, (c)
lenges of caring for adolescents with HIV and making the next 3-month routine clinic appointment
potential barriers to transitioning adolescents to with the adult infectious disease physician at SAC,
internal medicine-based care. Challenges to care (d) having a SAC social worker or peer educator
were identified as poor adherence to medication regi- accompany the client to the first appointment at
mens, adolescent sexuality, and disorganized social the adult clinic with the adult infectious disease
environments. Potential barriers to transitioning these physician, and (e) providing a follow-up session at
adolescents included families’ negative perceptions 1 year between the client and SAC psychosocial
of and experiences with stigma of HIV disease, team. Follow-up revealed certain barriers to transition
perceived and actual lack of autonomy, and difficulty that continued to exist. Adult providers lack knowl-
letting go of relationships that were frequently edge about public assistance programs for adoles-
described as familial. Stigma associated with an HIV cents. The barriers that were more directly related
diagnosis was identified as a component of adherence to adolescent clients included transportation, employ-
to medications, sexuality, disclosure of HIV status, ment, family support, food, and housing.
and difficulty trusting a new health care provider. One explanation for the lack of evidence-based
The authors suggested that increased dialogue transition models is that the need to prepare and
between pediatric and adult HIV care providers, indi- transfer perinatally infected children and adolescents
vidualized transition plans for patients and families, to adult care is a relatively new phenomenon. Before
and mechanisms to address stigma and autonomy the mid-1990s, when multidrug antiretroviral therapy
would ultimately improve outcomes after transition (ART) emerged as the standard of care, perinatally
to adult care. infected children usually did not survive to adult-
A second recent publication described the devel- hood. A retrospective study of 1,142 perinatally in-
opment of a protocol for transitioning adolescents fected children born between November 1980 and
with HIV infection to adult care (Maturo et al., December 1997 in the Italian Register of HIV Infec-
2010). The protocol was developed by a multidisci- tion in Children and the Italian National AIDS
plinary team of adolescent HIV-care providers at registry calculated risk of death from HIV-related
a university-based clinic in Miami that traditionally illnesses according to the type of drug therapy
serves low-income and underserved populations. received (de Martino et al., 2000). The researchers re-
The Specialty Adolescent Clinic (SAC) provides ported that the adjusted risk of death decreased by

4. 286 JANAC Vol. 22, No. 4, July/August 2011
70% in a group receiving triple-drug therapy after from the University of South Florida. Site representa-
1996 compared with that receiving single-drug tives were recruited from eligible ATN clinic sites,
therapy before 1996. A recent report from the and all eligible sites participated. Puerto Rico and Tu-
Antiretroviral Therapy Cohort Collaboration (2008) lane clinic in New Orleans were considered ineligible
presented the results of a meta-analysis of 14 cohorts to participate because of language and transcription
of HIV-infected adolescents in the United States, problems in the former and severe disruption of
Canada, and Europe. Considering adolescents who services resulting from Hurricane Katrina in the
began initial treatment regimens between the years latter. The principal investigator at each site was
2003 and 2005, a 20-year-old starting ART could asked to identify one to three individuals who were
expect to live an additional 43 years. considered the most knowledgeable and experienced
The need to address this phenomenon was recog- in their clinic’s transition program. This purposeful
nized by the Department of Health and Human sample was then contacted for participation in the
Services (DHHS). The November 2008 DHHS Guide- study.
lines for the Use of Antiretroviral Agents in HIV-1-
Infected Adults and Adolescents contained the first
discussion of transitioning adolescents with HIV to Measures
the adult care setting (Panel on Antiretroviral
Guidelines for Adults and Adolescents, 2008). The A multidisciplinary team of researchers experi-
DHHS recommendations to promote successful enced in HIV care developed a 39-item semi-
transition are listed in Table 1. structured interview tool. Questions were designed
The paucity of research examining the transition of to elicit information about perceived barriers and
perinatally infected adolescents combined with facilitators to transition and case reports of successful
increasing numbers of behaviorally infected adoles- and failed transition. Demographic and frequency
cents magnifies the need to examine the transition data were collected, and open-ended questions were
process in these populations. Further understanding used to encourage site representatives to elaborate
about how HCT affects both perinatally infected on their views of transitions as well as specifics about
and behaviorally infected adolescents may ultimately their current practices. The interview schedule and
allow providers to improve care for this vulnerable instructions for participation were e-mailed to each
population. The aim of this research was to begin site representative before the interview. The inter-
a process to ensure that HCT is a purposeful, well views were conducted between January 2007 and
planned, and expected experience for adolescents July 2007 by telephone, with each site’s representa-
with HIV disease. The purpose of this qualitative tives interviewed as a group. The average length of
study was to describe the characteristics and current 10 of the 14 interviews was 54 minutes (range, 40-
practices of the ATN for HIV/AIDS Interventions 64 minutes) and the remaining four interviews lasted
clinics related to transition of HIV-infected adoles- 76, 83, 100, and 145 minutes, respectively. These
cents to adult medical care. lengthier interviews resulted from additional discus-
sions that were tangentially related to topics of tran-
sition. Verbal informed consent for both participation
Methods and digital recording of the interviews was obtained.
All interviews were conducted by a single member of
Participants and Procedure the research team, and were audio-taped and profes-
sionally transcribed. The interviewer was a creden-
The ATN for HIV/AIDS Interventions is a multi- tialed HIV-specialty nurse practitioner and PhD
center collaborative network funded by the NIH to candidate. Copies of the transcribed interviews
study the HIV/AIDS epidemic in adolescents. Rele- were were stored by two members of the research
vant leadership groups within the ATN and respective team in an electronic format. Written policies and
site leadership agreed to this research collaboration, procedures as well as other documents specifically
and internal review board approval was obtained related to transition were requested for review.

5. Gilliam et al. / Adolescent Transition 287
Table 1. Department of Health and Human Services The transcripts and clinic documents were then
Recommendations to Promote Successful reviewed and coded by an independent experienced
Transition
qualitative researcher. Coding discrepancies were
Optimizing provider communication between adolescent discussed among the independent reviewer and the
and adult clinics two research team analysts until consensus was
Addressing patient/family resistance caused by knowledge reached.
deficits, stigma, or disclosure concerns, and differences
in practice styles
Rigor in the summary and reporting of the inter-
Preparing youth for life-skills development, including counseling view data was achieved through triangulation of
them on the appropriate use of a primary care provider, both method and analysts. Triangulation of methods
appointment management, the importance of prompt symptom included use of both the interview transcripts and
recognition and reporting, and of the importance of supporting documents supplied by the clinics.
self-efficacy with medication management, insurance,
Analyst triangulation was accomplished through
and entitlements
Identifying an optimal clinic model for a given setting (i.e., independent analysis by two members of the research
simultaneous transition of mental health and/or case team and analysis by an independent researcher.
management vs. a gradual phase-in)
Implementing ongoing evaluation to measure the success of
a selected model Results
Engaging in regular multidisciplinary case conferences between
adult and adolescent care providers
Implementing interventions that may be associated with Demographics
improved outcomes, such as support groups and mental health
consultation The 14 ATN sites represented in this study were
Incorporating a family planning component into clinical care located in Chicago (2), New York (2), and one each
SOURCE: Panel on Antiretroviral Guidelines for Adults and Adoles- in Boston, Philadelphia, Washington DC, Baltimore,
cents. (2008). Guidelines for the use of antiretroviral agents in HIV- Memphis, Tampa, Ft. Lauderdale, Miami, Los
1-infected adults and adolescents, p. 75. Retrieved from http://www. Angeles, and San Francisco. At the time of this study,
aidsinfo.nih.gov/Guidelines/GuidelineDetail.aspx?MenuItem5 these 14 clinics managed a total of 1,775 patients
Guidelines&Search5Off&GuidelineID57&ClassID51 ages 13 to 25 years. There were 31-266 patients at
each site in this age group.
Methods of Analysis The clinic populations were described by a variety
of demographic variables that were not mutually
An a priori list of content and contextual topics exclusive. The overlapping demographic variables
referred to in the interview tool was developed as included adolescents who were perinatally infected;
a preliminary code list. The list included theory or behaviorally infected; of gay, bisexual, transsexual,
theoretical constructs, decision points, professional or heterosexual orientation; and intravenous drug
disciplines, facilitators, and barriers. A coding matrix users. None of the ATN clinics exclusively managed
was then developed according to the methods perinatally infected adolescents. Five clinics
described by Miles and Huberman (1994). Data managed patients from infancy to age 25, and eight
were organized using Microsoft Excel (Redmond, clinics exclusively managed adolescents from 12 or
WA) and ATLAS.ti (ATLAS.ti Scientific Software 13 years to age 25. One clinic managed patients of
Development GmbH, Berlin, Germany). all ages (infancy to adulthood), with different
The verbatim transcripts were independently providers managing specific age groups. The number
analyzed by two members of the research team, using of patients transitioned to adult care per clinic ranged
content analysis. Any text passage considered partic- from four to16 per year looking retrospectively over
ularly rich or representing ideas, thoughts, and feel- the previous 3 to 4 years, depending on data collec-
ings that addressed a previously identified or unique tion practices.
theme was copied and exported to a Word document A total of 19 site representatives representing 14
for later review and consideration. All submitted ATN clinic sites were interviewed between March
clinic documents were similarly reviewed and coded. and December 2007. The site representatives

6. 288 JANAC Vol. 22, No. 4, July/August 2011
included social workers (n 5 7), nurse practitioners transition even means and we probably spent, let’s
(n 5 7), physicians (n 5 3), one registered nurse, say 2 years, just talking, trying to teach the difference
and one health educator. Six were males, four were between transfer and transition.’’
social workers, and two were physicians. In three of Site representatives who described transition as
the sites, a nurse practitioner and a social worker a process reported beginning the discussion of transi-
had collaborated to develop and implement their clin- tion when patients were in their mid-to-late teenage
ic’s transition practice guidelines. years. One representative reported beginning transi-
tion discussion as early as age 16 and another re-
Research Questions ported beginning the discussion on ‘‘the first day
they enter care at this clinic.’’ These clinics had out-
How do ATN health care team members view tran- lined specific developmental tasks and learning
sition? All key informants agreed that transition to objectives that were to be accomplished during the
adult care was an important issue that was increasing process of transition.
in urgency as perinatally-infected adolescents ap- Alternatively, those sites that viewed transition
proached the age of 24. Representatives from seven more as an event or simple transfer of care began to
of the clinics concluded that transition to adult care prepare adolescents during the final one or two clinic
should occur between 22 and 24 years of age. Repre- visits before transferring to an adult care provider.
sentatives from five clinics had not established When queried about the length of their clinic’s transi-
a specific age at which to transition, preferring to indi- tion process, key informants from clinics without
vidualize the experience on the basis of levels of matu- a formal transition process provided responses such
rity and responsibility. One clinic preferred to as: ‘‘Once we’ve identified that we are going to transi-
transition patients between 24 and 25 years of age. tion the patient, it’ll be done at their next visit,’’ or ‘‘We
Interestingly, this clinic representative was a nurse begin discussing transition at their 24th birthday.’’
practitioner who worked at both the adolescent and Several key informants described how their views
adult clinics. The nurse practitioner cared for transi- had changed over time as the younger patients
tioning adolescents during their final 2 years in the matured through their programs. One informant said:
adolescent clinic and became their provider when Our method of providing support in the pediatric
they transferred to the adult clinic at age 25. The re- environment was really protecting them, but yet
maining clinic preferred to transition adolescents to not teaching them the skills of independence.
adult care between 20 and 22 years of age. This clinic so we had to address our own interactions with
managed patients of all ages, birth to adulthood, within our young people. I am probably admittedly
the same physical site. All sites proposed a multidisci- the world’s worst because as long as the patient
plinary team approach to the process of transition. is here in my mind they are still 16 when they
Several providers noted that within their clinical are really 24. So really, making sure that we
settings, there could be different views related to are supporting each other to recognize that they
HCT. At one end of the continuum, providers viewed are not our babies anymore and really [trying
preparing for transition as simply setting up an to] promote that independence. I think that has
appointment with an adult provider. Other providers been one of the issues across the board that we
considered transition to be a time to provide educa- have had to address is how we view our patients.
tion and skill development to promote independent
functioning as an adult. This dichotomy of opinions Another perspective when viewing this population
related to the fact that transition to adult care for peri-
was most apparent when examining those clinics
with structured transition programs compared with natally infected children was a relatively new
phenomenon beginning in the mid-1990s with combi-
those without structured programs. The major differ-
ence in the two groups was whether transition was nation of ART. One key informant explained:
viewed as an event or a process. A participant re- We actually find it to be really exciting because,
ported that ‘‘. people have different ideas of what when you think about it, before, we were working

7. Gilliam et al. / Adolescent Transition 289
really hard to engage people in care, but we were Table 2. Desirable Characteristics for an Adult Clinic
engaging them with the idea that they were going A single contact person assists the adolescent in transition
to die. That’s the truth. So for us, transition is, The new provider is introduced to the adolescent as the
like, such a hopeful thing because the idea behind preparation and process of transition begins
it is that young people have a future. So we actu- Comprehensive services are provided that include primary care,
ally find it to be really exciting. dental care, and on-site pharmacy services
Psychosocial services such as case management, mental health,
Six of the 14 ATN clinics had written guidelines or and support groups are provided
The staff is culturally competent and lesbian, gay, bisexual, and
written procedures that detailed a transition model. transgender friendly
Key informants from these clinics provided a much Follow-up is provided by a case manager from the pediatric clinic
more comprehensive and expansive view of transi- Adult providers deliver age- and developmentally-appropriate
tion. This group also described a philosophy that care for the adolescent
incorporated ideas such as beginning the transition Communication occurs between adolescent and adult providers
during the transition process
process early, individualizing the process, using
developmental theory, and a holistic approach that
incorporated patients’ psychosocial and medical Characteristics identified as facilitators to
needs. a successful transition were listed by the respondents
and extracted from their anecdotal reports of success-
What do ATN health care team members perceive ful transitions. These characteristics can be distinctly
as facilitators to a successful transition to adult care? categorized as intrinsic or extrinsic to the adolescent.
Several interview questions focused on the annual The intrinsic characteristics included emotional
number of adolescents transitioned to adult care and maturity along with the ability and motivation to
the number of successes or failures of these transi- function independently. External factors perceived
tions. Answers to these questions were admitted to to facilitate a successful transition included a strong
be estimates and often incomplete. During the early social support system, uninterrupted health insurance
interviews, it became apparent there was no consis- benefits, available transportation system, and stable
tent definition of ‘‘successful’’ transition. One infor- housing.
mant asked, ‘‘Are you talking about transition as the Key informants were asked several questions
actual physical transition, going from here to there, about preferred adult referral sites. As these questions
or just the process?’’ After this problem was acknowl- were answered, a picture of the ideal adult clinic
edged, the informants responded with descriptions of began to emerge. Characteristics of an adult clinic
ideal transitions but were unable to accurately report that were reported as desirable and perceived to facil-
an outcome. Anecdotal comments during the inter- itate successful transition are listed in Table 2.
views led the authors to conclude that another cause
for the lack of outcome data was the absence of What do ATN health care team members perceive
tracking mechanisms after transfer from the adoles- as barriers to a successful transition to adult care?
cent site. Only three clinics were able to track The most commonly reported barriers to successful
patients by appointment schedules or laboratory transition to adult care included system issues, such
results through an intra-agency computer network. as health insurance, and the inability to track patients
The remaining clinics relied on informal methods after transfer to adult care. Barriers categorized as
of tracking patients after they transferred out of the patient issues included adherence problems, medi-
adolescent clinics. These informal methods consisted cally complex patients, drug use, and mental health
of feedback from the adolescents themselves or problems. These problems are emphasized in the
through follow-up by a clinic staff member, usually following statement:
acting in the role of a case manager. Several key I would say that all of the dually diagnosed – and
informants expressed concerns of Health Insurance by dually diagnosed, I mean they had HIV and
Portability and Accountability Act compliance with either substance abuse or serious mental health
this informal follow-up. issues – have been lost to regular care during

8. 290 JANAC Vol. 22, No. 4, July/August 2011
the transition. I think it is part of their way of of practice concerns for pediatric, adolescent, and
avoiding it. adult providers. Medical settings mentioned as
Key informants described several psychological problematic were children’s hospitals and emer-
issues that were thought to be barriers to a successful gency departments. Concerns were voiced about
transition, including the difficulty of letting-go of the inconsistent application of age restrictions
long-standing relationships, stigma, and perceptions among adolescents with congenital illnesses when
that the adult clinic was the ‘‘AIDS place.’’ Site compared with adolescents with HIV disease. An
representatives reported that the adolescents’ percep- informant from a major teaching institution
tions and fears of the adult clinics were an important reported:
barrier to HCT. Because adult HIV clinics are There isn’t a firm age cutoff that’s consistent
known in many communities, adolescents worried across the hospital. And the kid who is told
about the lack of confidentiality and feared being when she’s admitted for PCP at 24, that she
recognized as having HIV. One site representative can’t get admitted here anymore, she’s too
described how adolescents felt in adult clinic wait- old, by the resident who admits her, when she’s
ing rooms: in a bed next to a 40-year-old with cystic
One of the scariest things for the kids is that the fibrosis, it feels to them inconsistent.
adult clinics sound scary. The adult patients Informants reported that during an emergency
look so sick and that.you know, [that is] hospitalization to an adult hospital unit, it was
what they’re going to look like some day. And common for a transitioning adolescent or one that
they [the patients] are afraid of that. had been lost to follow-up during transition to
One key informant described a constellation of provide the name of a previous pediatric or adoles-
issues that could individually or collectively be cent provider as their medical contact, not knowing
a barrier to successful transition: that pediatricians did not have privileges at these
adult facilities and could not participate in the care
Doing the chart review is what gave us the view
of these adolescents.
.[we] did not recognize the importance of, you
know, such as issues as abandonment, disen-
What strategies have ATN health care teams devel-
franchised from society, and things that are
oped to assist patients to make a successful transition
talked about.learning disability, amount of
to adult medical care? All sites proposed a multidis-
education, how they viewed a system or struc-
ciplinary approach to the process of transition. Six of
ture. The ones who did not remain in care or
the 14 clinics had written policies and procedures that
did not go to school after eighth grade have
addressed such things as the age at which transition
very little structure in their lives so here we
would be initiated; the ages by which certain behav-
are expecting them to go into adult care and
iors were expected and accomplished; and staff
they do not even know how to have a daily
assignments for transition objectives, responsibilities,
routine so a lot of it was re-looking at where
and activities. The staff members involved in transi-
they had come from and the fact that we were
tion most often included a care manager, social
going to have to parent them in a way to
worker, health care provider, and a youth advocate
promote independence. We are helping them
or peer partner. Five of the clinics with written poli-
do those steps of independence. It has really
cies and procedures credited nurse practitioners,
guided our, now looking back, it has really
social workers, or a combination of both working
guided our practice.
together as either the formal or informal transition
Another set of issues that could potentially inter- team leaders.
rupt the continuity of care for older adolescents Two clinics reported using a written test of HIV
were reported, including medical emergencies and self-care knowledge that included disease-specific
hospital admissions. Specific examples mentioned information, transmission, secondary prevention
were age restrictions at specific hospitals and scope information, and treatment information. Both of these

9. Gilliam et al. / Adolescent Transition 291
Table 3. Knowledge/Skills Checklist and Plan for learning from them and moving forward we
Transition to Adult Care Topics continue to learn.
Knowledge and Skills Required for Self-Care
Knowledge of health condition
Six ATN clinics have developed structured transi-
Medication management tion programs. Some elements were common among
Preventive health behaviors the programs such as a mechanism that provided
Responsible sexual activity and family planning introductions or gradual exposure of the adolescent
Community resources to the prospective adult provider as well as a tour
Education vocation and career plans
of potential adult clinics during the transition
Family support
Housing or goals for independent living process. A case manager or peer educator and
Transportation a member of the adolescent’s family or support
Funding sources group accompanied the patient on these visits, as
well as to first appointments. Representatives from
four sites commented on the benefits of continued
clinics include a follow-up phone call at 3 months contact between the adolescent and his or her
after the transfer of care. adolescent case manager during the first year after
Three clinics reported using documentation and transfer to the adult clinic.
charting tools that were specific to transition, Two sites employed an adult nurse practitioner
including a checklist of knowledge and skills for to manage the care of transitioning patients during
management of HIV and a transition-specific plan the last year or two before transfer to the adult
of care. Topics addressed in the knowledge or skills clinic. This adult provider would continue as the
checklist and plan of care are listed in Table 3. Two adolescent’s provider after the transfer to the adult
clinics described the use of a Transition Workbook clinic. One site employed a psychiatrist who
developed by the Adolescent HIV/AIDS Workgroup managed patients at both the adolescent and adult
(AETC NRC, 2006), which uses a developmental sites.
approach to teach and reinforce various life-skills
and health information. Are there differences in the transition of a patient
A site informant who began to develop her clinic’s who has developmental delays or cognitive limita-
transition program more than 8 years ago described tions (an adolescent who cannot make age-
how the process had evolved. appropriate health decisions); is a member of a sexual
What we’ve learned is that we really need to minority or is gay; is a member of a gender minority
teach them [the adolescents] life skills, respon- or transgender; is medically complex; becomes preg-
sibility, skills around their medical issues. nant; or has a long-standing therapeutic relationship
how to advocate for themselves within an adult with the team? No differences in transition were
care system because they are not going to get found for patients who were members of a sexual
the coddling and the enabling [the way] they’ve or gender minority. Attempts were made to identify
had here.. Children and adolescents are and match patients to adult clinics that were consid-
treated differently than adults and when they ered culturally competent as well as gay, lesbian,
get to an adult facility, it’s on them. They will bisexual, and transgender friendly. Informants from
not be called every week to remind them to 13 of the 14 sites reported that more attention and
take their meds, not going to be called for their time devoted to skill development would be provided
appointments, so there is a lot that they have to to adolescents with developmental or cognitive
learn and those are the things that we have delays. Informants from 12 of the 14 sites described
really learned ourselves in terms of what we a difference in planning and more extensive commu-
need to [do to] prepare these kids to move to nication between the adolescent provider and adult
adult care.So we’ve really learned from our provider if the patient was considered to be medically
mistakes and they’ve taught us a lot about complex. Six of the informants specifically
what we did wrong in the beginning. So mentioned that transition would be delayed during

10. 292 JANAC Vol. 22, No. 4, July/August 2011
a medical or social crisis and not attempted if the ado- with HIV disease. The notion that experienced clini-
lescent’s prognosis was poor. cians and researchers all struggle with this problem
It was noted by informants from seven sites that suggests that it is one not easily solved. Although
pregnant adolescents seemed to experience an easier objective evidence relating to outcomes after transi-
transition to adult care. This information was of tion was lacking, our study seems to suggest that
interest because the explanations for this phenomenon those site representatives who described their
may be instructive in planning transition interventions programs as more ‘‘successful’’ were those with the
for other adolescent groups. Pregnant adolescents most experience in designing and implementing
were frequently referred to OB/GYN providers during a transition program, those that used a developmental
the pregnancy. Several respondents hypothesized that approach, and those that included an iterative process
women could have an easier transition to adult care of evaluation and revision to produce individualized
because they had interacted with a provider outside patient transition plans.
the adolescent clinic setting during the pregnancy. A
unique feature to this group was that they received Strengths and Limitations
Medicaid benefits and other entitlements because of
their pregnancies. This would not only increase the The strengths of our study include a high rate of
number of available adult providers but might also voluntary participation from the clinics, which
assist with other expenses necessary to stay in care, included representatives from several professional
such as money for transportation, co-pays, and stable disciplines. The clinics were geographically diverse
housing. and cared for adolescents from all subpopulations
living with HIV. As previously noted, the clinics
had all successfully competed for National Institutes
Discussion of Health funding in this area and were likely repre-
sentative of the most experienced academic programs
Despite the absence of a standard definition of in the United States.
transition, we did find some trends across sites that Limitations to the study include the lack of site
suggested positive outcomes after transition. Six of anonymity so it may have been difficult to be candid
the ATN sites had developed formalized approaches regarding less-than-ideal practices. There was also
to HCT. All of the sites that used a formalized the possibility of interviewer bias, selection bias,
approach reported using collaborative transition and social desirability bias.
teams, a developmental approach, and planned activ-
ities to facilitate patient education and skill building. Suggestion for Future Research
These activities were initiated early and reinforced
frequently. Each of these sites reported some type When the criteria for successful transition have
of organized events for the patient and adult provider been defined and the ability to accurately measure
that served as an introduction to begin a therapeutic these criteria is established, it will be important to
relationship before actual transfer to the adult site. determine predictors of success. Future studies could
There was also considerable agreement in terms of include young adults who had recently transitioned
factors that served as facilitators and barriers to tran- or were currently in the process of transition. Addi-
sition. Finally, representatives from clinics both with tional factors that positively or negatively affect the
and without established transition programs recog- transition experience could be identified. These
nized a continued need to improve practice related potentially important phenomena could then be
to transition. explored systematically in future intervention
Our research demonstrates how difficult the studies. From these and other data, clinical care-
process of transition, especially among HIV- based delivery systems could be designed, imple-
infected adolescents, really is. Barriers such as mented, and evaluated, and an evidence base could
poverty, stigma, and marginalization are deeply be established to address the transition needs of
rooted in our society and are not unique to individuals this unique population.

11. Gilliam et al. / Adolescent Transition 293
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Retrieved from http://www.hab.hrsa.gov/publications/hrsa
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The authors report no real or perceived vested
Maturo, D., Powell, A., Major-Wilson, H., Sanchez, K., De San-
interests that relate to this article (including relation- tis, J.P., Friedman, L.B. (in press). Development of
ships with pharmaceutical companies, biomedical a protocol for transitioning adolescents with HIV infection
device manufacturers, grantors, or other entities to adult care. Journal of Pediatric Health Care.
whose products or services are related to topics doi:10.1016/j.pedhc.2009.12.005
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from pediatric to adult care. Pediatric Transplantation, 9,
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