Transition of Adolescents With HIV to AdultCare: Characteristics and Current Practicesof the Adolescent Trials Network for HIV/AIDSInterventionsPatricia P. Gilliam, PhD, MEd, NPJonathan M. Ellen, MDLori Leonard, ScDSara Kinsman, MD, PhDCecilia M. Jevitt, CNM, PhDDiane 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 transitionalways challenging and can be even more so foradolescents with HIV disease. The purpose of this According to the most recent Centers for Diseasestudy 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 infrom the clinics of the Adolescent Trials Network forHIV/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 Hopkinsused 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 HopkinsTrials 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 ofconsensus 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 ofa 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 Adolescent22, 283-294) Copyright Ó 2011 Association of Medicine, University of South Florida College of Medi- cine, Tampa, Florida, USA; and the Adolescent TrialsNurses in AIDS Care Network for HIV/AIDS Interventions.JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 22, No. 4, July/August 2011, 283-294doi:10.1016/j.jana.2010.04.003Copyright Ó 2011 Association of Nurses in AIDS Care
284 JANAC Vol. 22, No. 4, July/August 2011the United States from 2003 to 2006 (Hall et al., tion, and social isolation that may hinder adolescents2008). An estimated 10% to 15% of these new infec- from seeking the support of unfamiliar providerstions occurred in individuals ages 13–24 (CDC, (AIDS Education and Training Centers National2008). Currently, an estimated 19,979 adolescents Resource Center [AETC NRC], 2006; HIV/AIDSof 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 withcents receive their medical care in a pediatric or HIV may have experienced parental illness and lossadolescent 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 processmedical 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, theyoung adults with special health care needs from American Academy of Pediatrics, Americanchild-centered to adult-centered health care (Blum, Academy of Family Physicians, American CollegeGarrell, Hodgman, & Slap, 1993). Adolescents with of Physicians, and American Society of Internalspecial 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 adultsatric 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 thatneeds 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 areBlum, 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 transitionmanagement 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 Healthfor the care of these adolescents with multifaceted Clinical Research Program that planned to closemedical and psychosocial needs (McDonagh, 2005; within the year. Readiness to transition and level ofPeter, Forke, Ginsburg, & Schwarz, 2009; Reiss anxiety associated with transition were measured inet 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 oradolescent 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 toprovider–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 todelays, and concerns about separating from their cover out-of-pocket expenses; and (d) knowledgepediatric providers, which may further complicate deﬁcits related to HIV disease and medications. Asthe transition process (Rosen et al., 2003). The hypothesized, poor readiness scores were associatedHCT 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
Gilliam et al. / Adolescent Transition 285readiness to transition scores and their levels of specialty and primary care to patients ages 15 to 25anxiety 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 anneeds, emotional barriers, and resistance to transition, Adolescent Trials Network (ATN) clinic and wasas 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 primaryﬁed that focused on the transition of adolescents issues: (a) the number of adolescents currently in carewith HIV disease from child-centered care to adult with pediatric or adolescent providers at SACcare. 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 thepurposive 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 developmentand nine pediatric health care providers from the of this protocol was an iterative process, which nowYale Pediatric AIDS Care Program in New Haven, consists of ﬁve phases: (a) discussing transitionConnecticut. Open-ended interviews were conducted with clients at age 23 who were pre-identiﬁed duringwith all participants between November 2005 and team meetings, (b) introducing the client at age 24 toApril 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 appointmentpotential 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 educatorwere identiﬁed as poor adherence to medication regi- accompany the client to the ﬁrst appointment atmens, adolescent sexuality, and disorganized social the adult clinic with the adult infectious diseaseenvironments. Potential barriers to transitioning these physician, and (e) providing a follow-up session atadolescents included families’ negative perceptions 1 year between the client and SAC psychosocialof and experiences with stigma of HIV disease, team. Follow-up revealed certain barriers to transitionperceived 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 relateddiagnosis 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-basedThe authors suggested that increased dialogue transition models is that the need to prepare andbetween pediatric and adult HIV care providers, indi- transfer perinatally infected children and adolescentsvidualized transition plans for patients and families, to adult care is a relatively new phenomenon. Beforeand mechanisms to address stigma and autonomy the mid-1990s, when multidrug antiretroviral therapywould ultimately improve outcomes after transition (ART) emerged as the standard of care, perinatallyto 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 andwith 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 AIDSplinary team of adolescent HIV-care providers at registry calculated risk of death from HIV-relateda university-based clinic in Miami that traditionally illnesses according to the type of drug therapyserves 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
286 JANAC Vol. 22, No. 4, July/August 201170% 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 ineligiblepresented the results of a meta-analysis of 14 cohorts to participate because of language and transcriptionof HIV-infected adolescents in the United States, problems in the former and severe disruption ofCanada, and Europe. Considering adolescents who services resulting from Hurricane Katrina in thebegan initial treatment regimens between the years latter. The principal investigator at each site was2003 and 2005, a 20-year-old starting ART could asked to identify one to three individuals who wereexpect 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 purposefulnized by the Department of Health and Human sample was then contacted for participation in theServices (DHHS). The November 2008 DHHS Guide- study.lines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents contained the ﬁrstdiscussion of transitioning adolescents with HIV to Measuresthe adult care setting (Panel on AntiretroviralGuidelines 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 andperinatally infected adolescents combined with facilitators to transition and case reports of successfulincreasing numbers of behaviorally infected adoles- and failed transition. Demographic and frequencycents magniﬁes the need to examine the transition data were collected, and open-ended questions wereprocess in these populations. Further understanding used to encourage site representatives to elaborateabout how HCT affects both perinatally infected on their views of transitions as well as speciﬁcs aboutand behaviorally infected adolescents may ultimately their current practices. The interview schedule andallow providers to improve care for this vulnerable instructions for participation were e-mailed to eachpopulation. 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 andplanned, 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 ofstudy 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 lastedclinics related to transition of HIV-infected adoles- 76, 83, 100, and 145 minutes, respectively. Thesecents 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 ofParticipants 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 PhDcenter collaborative network funded by the NIH to candidate. Copies of the transcribed interviewsstudy the HIV/AIDS epidemic in adolescents. Rele- were were stored by two members of the researchvant leadership groups within the ATN and respective team in an electronic format. Written policies andsite leadership agreed to this research collaboration, procedures as well as other documents speciﬁcallyand internal review board approval was obtained related to transition were requested for review.
Gilliam et al. / Adolescent Transition 287Table 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 wereOptimizing provider communication between adolescent discussed among the independent reviewer and the and adult clinics two research team analysts until consensus wasAddressing 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 entitlementsIdentifying 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 ResultsEngaging in regular multidisciplinary case conferences between adult and adolescent care providersImplementing 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 wereIncorporating a family planning component into clinical care located in Chicago (2), New York (2), and one eachSOURCE: 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, Los1-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 patientsGuidelines&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 variablesreferred 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 drugdisciplines, facilitators, and barriers. A coding matrix users. None of the ATN clinics exclusively managedwas then developed according to the methods perinatally infected adolescents. Five clinicsdescribed by Miles and Huberman (1994). Data managed patients from infancy to age 25, and eightwere organized using Microsoft Excel (Redmond, clinics exclusively managed adolescents from 12 orWA) and ATLAS.ti (ATLAS.ti Scientiﬁc Software 13 years to age 25. One clinic managed patients ofDevelopment GmbH, Berlin, Germany). all ages (infancy to adulthood), with different The verbatim transcripts were independently providers managing speciﬁc age groups. The numberanalyzed by two members of the research team, using of patients transitioned to adult care per clinic rangedcontent analysis. Any text passage considered partic- from four to16 per year looking retrospectively overularly 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 14for later review and consideration. All submitted ATN clinic sites were interviewed between Marchclinic documents were similarly reviewed and coded. and December 2007. The site representatives
288 JANAC Vol. 22, No. 4, July/August 2011included 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 differenceand 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 asthe 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 teenageic’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 learningsition? All key informants agreed that transition to objectives that were to be accomplished during theadult care was an important issue that was increasing process of transition.in urgency as perinatally-infected adolescents ap- Alternatively, those sites that viewed transitionproached the age of 24. Representatives from seven more as an event or simple transfer of care began toof the clinics concluded that transition to adult care prepare adolescents during the ﬁnal one or two clinicshould 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 withoutvidualize the experience on the basis of levels of matu- a formal transition process provided responses suchrity 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 ‘‘WeInterestingly, 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 viewsadult clinics. The nurse practitioner cared for transi- had changed over time as the younger patientstioning 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 pediatricthey transferred to the adult clinic at age 25. The re- environment was really protecting them, but yetmaining 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 withmanaged patients of all ages, birth to adulthood, within our young people. I am probably admittedlythe same physical site. All sites proposed a multidisci- the world’s worst because as long as the patientplinary 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 wesettings, there could be different views related to are supporting each other to recognize that theyHCT. At one end of the continuum, providers viewed are not our babies anymore and really [tryingpreparing for transition as simply setting up an to] promote that independence. I think that hasappointment with an adult provider. Other providers been one of the issues across the board that weconsidered transition to be a time to provide educa- have had to address is how we view our patients.tion and skill development to promote independentfunctioning 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 clinicswith 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
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, andwritten procedures that detailed a transition model. transgender friendlyKey informants from these clinics provided a much Follow-up is provided by a case manager from the pediatric clinicmore comprehensive and expansive view of transi- Adult providers deliver age- and developmentally-appropriatetion. This group also described a philosophy that care for the adolescentincorporated ideas such as beginning the transition Communication occurs between adolescent and adult providers during the transition processprocess early, individualizing the process, usingdevelopmental theory, and a holistic approach thatincorporated patients’ psychosocial and medical Characteristics identiﬁed as facilitators toneeds. 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 distinctlyas 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 emotionalnumber of adolescents transitioned to adult care and maturity along with the ability and motivation tothe number of successes or failures of these transi- function independently. External factors perceivedtions. Answers to these questions were admitted to to facilitate a successful transition included a strongbe estimates and often incomplete. During the early social support system, uninterrupted health insuranceinterviews, it became apparent there was no consis- beneﬁts, available transportation system, and stabletent deﬁnition of ‘‘successful’’ transition. One infor- housing.mant asked, ‘‘Are you talking about transition as the Key informants were asked several questionsactual physical transition, going from here to there, about preferred adult referral sites. As these questionsor just the process?’’ After this problem was acknowl- were answered, a picture of the ideal adult clinicedged, the informants responded with descriptions of began to emerge. Characteristics of an adult clinicideal 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 causefor the lack of outcome data was the absence of What do ATN health care team members perceivetracking 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 successfulpatients by appointment schedules or laboratory transition to adult care included system issues, suchresults through an intra-agency computer network. as health insurance, and the inability to track patientsThe remaining clinics relied on informal methods after transfer to adult care. Barriers categorized asof 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 healthof feedback from the adolescents themselves or problems. These problems are emphasized in thethrough 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 – andinformants expressed concerns of Health Insurance by dually diagnosed, I mean they had HIV andPortability and Accountability Act compliance with either substance abuse or serious mental healththis informal follow-up. issues – have been lost to regular care during
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 abouttransition, including the difﬁculty of letting-go of the inconsistent application of age restrictionslong-standing relationships, stigma, and perceptions among adolescents with congenital illnesses whenthat the adult clinic was the ‘‘AIDS place.’’ Site compared with adolescents with HIV disease. Anrepresentatives reported that the adolescents’ percep- informant from a major teaching institutiontions 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 consistentknown in many communities, adolescents worried across the hospital. And the kid who is toldabout the lack of conﬁdentiality and feared being when she’s admitted for PCP at 24, that sherecognized as having HIV. One site representative can’t get admitted here anymore, she’s toodescribed how adolescents felt in adult clinic wait- old, by the resident who admits her, when she’sing 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 knowinga 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 HIVwere reported, including medical emergencies and self-care knowledge that included disease-speciﬁchospital admissions. Speciﬁc examples mentioned information, transmission, secondary preventionwere age restrictions at speciﬁc hospitals and scope information, and treatment information. Both of these
Gilliam et al. / Adolescent Transition 291Table 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 continuedclinics include a follow-up phone call at 3 months contact between the adolescent and his or herafter 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 practitionerincluding a checklist of knowledge and skills for to manage the care of transitioning patients duringmanagement of HIV and a transition-speciﬁc plan the last year or two before transfer to the adultof care. Topics addressed in the knowledge or skills clinic. This adult provider would continue as thechecklist and plan of care are listed in Table 3. Two adolescent’s provider after the transfer to the adultclinics described the use of a Transition Workbook clinic. One site employed a psychiatrist whodeveloped 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-skillsand 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
292 JANAC Vol. 22, No. 4, July/August 2011a 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. Althoughpregnant 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 thatinterest because the explanations for this phenomenon those site representatives who described theirmay be instructive in planning transition interventions programs as more ‘‘successful’’ were those with thefor other adolescent groups. Pregnant adolescents most experience in designing and implementingwere frequently referred to OB/GYN providers during a transition program, those that used a developmentalthe pregnancy. Several respondents hypothesized that approach, and those that included an iterative processwomen could have an easier transition to adult care of evaluation and revision to produce individualizedbecause they had interacted with a provider outside patient transition plans.the adolescent clinic setting during the pregnancy. Aunique feature to this group was that they received Strengths and LimitationsMedicaid beneﬁts and other entitlements because oftheir pregnancies. This would not only increase the The strengths of our study include a high rate ofnumber of available adult providers but might also voluntary participation from the clinics, whichassist with other expenses necessary to stay in care, included representatives from several professionalsuch as money for transportation, co-pays, and stable disciplines. The clinics were geographically diversehousing. 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 sitesuggested positive outcomes after transition. Six of anonymity so it may have been difﬁcult to be candidthe ATN sites had developed formalized approaches regarding less-than-ideal practices. There was alsoto 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 ResearchThese activities were initiated early and reinforcedfrequently. Each of these sites reported some type When the criteria for successful transition haveof organized events for the patient and adult provider been deﬁned and the ability to accurately measurethat served as an introduction to begin a therapeutic these criteria is established, it will be important torelationship before actual transfer to the adult site. determine predictors of success. Future studies couldThere was also considerable agreement in terms of include young adults who had recently transitionedfactors 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 theand without established transition programs recog- transition experience could be identiﬁed. Thesenized a continued need to improve practice related potentially important phenomena could then beto 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 couldpoverty, stigma, and marginalization are deeply be established to address the transition needs ofrooted in our society and are not unique to individuals this unique population.
Gilliam et al. / Adolescent Transition 293 adolescents with chronic conditions: A position paper of the Clinical Considerations Society of Adolescent Medicine. Journal of Adolescent Health, 14, 570-576. Blum, R. W., Hirsch, D., Kastner, T. A., Quint, R. D., & Sandler, A. D. (2002). A consensus statement on health Providers who care for adult patients with HIV care transitions for young adults with special health care disease may need additional training in the needs from the American Academy of Pediatrics, American requisite set of knowledge and skills required Academy of Family Physicians, and the American College to successfully manage adolescents and young of Physicians American Society of Internal Medicine. Pediat- rics, 110, 1304-1306. doi:10.1016/S1054-139X(03)00208-8 adults with HIV disease. Brown, L. K., Lourie, K. J., Pao, M. (2000). Children and Adolescent providers, adult providers, and adolescents living with HIV and AIDS: A review. Journal patients and their families/social units are in- of Child Psychiatry, 41, 81-96. doi:10.1017/S00219 vested in the success of transition programs. 63099004977 These stakeholders must collaborate to deter- Centers for Disease Control and Prevention. (2008). HIV/AIDS mine the basic components of transition Surveillance Report, 2006, Vol. 18. Retrieved from http:// www.cdc.gov/hiv/topics/surveillance/resources/reports/ programs. de Martino, M., Tovo, P., Balducci, M., Galli, L., Gabiano, C., Transition programs need acceptable and Rezza, G., Pezzotti, P. (2000). Reduction in mortality measurable criteria to assess transition with availability of antiretroviral therapy for children with successes and failures. perinatal HIV-2 infection. Journal of the American Medical Nurses have communication, patient educa- Association, 284, 190-197. doi:10.1001/jama.284.2.190 tion, health promotion, and patient advocacy Futterman, D. C. (2005). HIV in adolescents and young adults: Half of all new infections in the United States. Topics in skills that can be used to contribute to all phases HIV Medicine, 13, 101-105. of transition programs. Hall, H. I., Song, R., Rhodes, P., Prejean, J., An, Q., Lee, L. M., . Janssen, R. S. (2008). Estimation of HIV incidence in the United States. Journal of the American Medical Association, 300, 520-529. doi:10.1001/jama.300.5.520 HIV/AIDS Bureau, Health Resources and Services Administra- Disclosures tion. (1999). Serving adolescents: The fundamentals. Retrieved from http://www.hab.hrsa.gov/publications/hrsa 1299.htm 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 ofships with pharmaceutical companies, biomedical a protocol for transitioning adolescents with HIV infectiondevice 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.2009.12.005covered in this manuscript) that could be construed McDonagh, J. (2005). Growing up and moving on: Transition from pediatric to adult care. Pediatric Transplantation, 9,as a conﬂict of interest. 364-372. doi:10.1111/j.1399-3046.2004.00287.x Miles, M., Huberman, A. (1994). Qualitative data analysis (2nd ed). Thousand Oaks, CA: Sage Publications. References Panel on Antiretroviral Guidelines for Adults and Adolescents. (2008). Guidelines for the use of antiretroviral agents inAIDS Education and Training Centers National Resource HIV-1-infected adults and adolescents. Retrieved Center. (2006). Adolescent transition workbook. Retrieved from http://www.aidsinfo.nih.gov/Guidelines/GuidelineDetail. from http://www.aids-ed.org/aidsetc?page5etres-displayre aspx?MenuItem5GuidelinesSearch5OffGuidelineID57 source5etres-269 ClassID51Antiretroviral Therapy Cohort Collaboration (2008). Life expec- Peter, N. G., Forke, C. M., Ginsburg, K. R., Schwarz, D. F. tancy of individuals on combination antiretroviral therapy in (2009). Transition from pediatric to adult care: Internists’ high-income countries: A collaboration analysis of 14 cohort perspective. Pediatrics, 123, 417-423. doi:10.1542/peds. studies. Lancet, 372, 293-299. doi:10.1016/S0140-6736(08) 2008-0740 61113-7 Reiss, J. G., Gibson, R. W., Walker, L. R. (2005). Health careBlum, R. W., Garrell, D., Hodgman, C. H., Slap, G. B. (1993). transitions: Youth, family and provider perspectives. Pediat- Transition for child-centered to adult health care systems for rics, 115, 112-120. doi:10.1542/peds.2004-1321
294 JANAC Vol. 22, No. 4, July/August 2011Rosen, D. S., Blum, R. W., Britto, M., Sawyer, S. M., Siegal, D. M. (2003). Transition to adult health care for young adults with chronic conditions: Position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 33, 309-311. doi:10.1016/S1054-139X(03)00208-8Vijayan, T., Benin, A. L., Wagner, K., Romano, S., Andiman, W. (2008). We never thought this would happen: Transitioning care of adolescents with perinatally-acquired HIV infection from pediatrics to internal medicine. AIDS Care, 21, 1222-1229. doi:10.1080/09540120902730054Weiner, L., Zobel, M., Battles, H., Ryder, C. (2007). Transi- tion from a pediatric HIV intramural clinical research program to adolescent and adult community-based care services: Assessing transition readiness. Social Work Health Care, 46, 1-19.Wojciechowski, E. A., Hurtig, A., Dorn, L. (2002). A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: A need for case management services. Journal of Pediatric Nursing, 17, 18-27. doi:10.1053/jpdn.2002.30930