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VOL. 28, NO. 5, 561–565


Linkage to and retention in care following healthcare transition from pediatric to

adult HIV care
Patrick Ryscavagea, Thomas Machariaa, Devang Patela, Robyn Palmeiroa and Vicki Tepperb
Institute of Human Virology, University of Maryland School of Medicine, Baltimore, MD, USA; bDivision of Pediatrics, University of Maryland
School of Medicine, Baltimore, MD, USA


Outcomes following healthcare transition (HCT) from pediatric to adult HIV care are not well Received 25 February 2015
described. We sought to describe clinical outcomes following HCT within our institution among Accepted 9 December 2015
young adults with behavioral-acquired (N = 31) and perinatally-acquired (N = 19) HIV. We
conducted a retrospective cohort study among HIV-infected adults who attempted transition HIV; healthcare transition;
from pediatric to adult HIV care within our institution. The primary end point was retention in adolescent; young adult
care, defined as the completion of at least two visits over 12 months following linkage to adult
care. Additional end points include time to linkage to adult care, and changes in CD4 + T cell
count and HIV RNA across time. Outcomes were compared between perinatal and behavioral
HIV cohorts. Binary data were analyzed using the Fisher exact test and continuous data were
analyzed using the Mann–Whitney test. Forty-three (86%) of 50 patients were successfully linked
to adult care. The median time to linkage was 98 days. Fifty percent of patients achieved full
retention in care at 12 months post-linkage. Though those with behavioral-acquired HIV
attempted transfer at an older age, the groups did not differ in rates of linkage and retention in
adult care. CD4 + T cell counts and rates of viral suppression did not differ between pre- and
post-HCT periods. Despite high rates of successful linkage to adult care in our study population,
rates of retention in adult HIV care following HCT were low. These results imply that challenges
remain in the adult HIV care setting toward improving the HCT process.

examine objective clinical measures of HIV HCT suc-
The HIV epidemic uniquely affects adolescents and cess, including linkage to and retention in adult care,
young adults (AYA) (Centers for Disease Control and as well as immunologic and virologic outcomes following
Prevention, 2009). In Maryland, 34% of new HIV infec- HIV HCT. In addition, it is unclear whether these HCT
tions occur among those aged 13–29 years, and this age outcomes differ between AYA with behaviorally
group represents 11.3% of living HIV cases in the state acquired HIV disease compared with AYA with perina-
(Maryland HIV/AIDS Epidemiological Profile, 2012). tally acquired HIV disease.
In the United States, all children with perinatally The University of Maryland adolescent HIV clinic has
acquired HIV, as well as many newly diagnosed AYA served children and adolescents with HIV disease
with behaviorally acquired HIV disease, will enter care through two specialized multidisciplinary pediatric
into a pediatric clinical setting but will ultimately need clinics. The Special Teens At Risk – Together Reaching
to receive care in an adult-centered clinical setting. Access, Care, and Knowledge (STAR TRACK) program
Healthcare transition (HCT) from pediatric to adult was created to provide comprehensive HIV and suppor-
care is more complex in the context of HIV disease tive care to HIV-infected youth. In addition, the Pedi-
(Blum et al., 1993; Dowshen & D’Angelo, 2011; Flynn atric AIDS program (PACE) provides HIV care from
et al., 2013) due to challenges such as psychosocial bar- birth through adolescence for patients, the majority of
riers, neurocognitive disease, HIV-related stigma, and whom acquired HIV through perinatal transmission.
poverty (Dowshen & D’Angelo, 2011; Gilliam et al., These clinics historically utilized distinct HCT programs.
2011; Miles, Edwards, & Clapson, 2004; Valenzuela Project ACCESS was created and incorporated into the
et al., 2011; Vijayan, Benin, Wagner, Romano, & Andi- STAR TRACK program in 2007. This protocol created
man, 2009; Wiener, Kohrt, Battles, & Pao, 2011; Wiener, a transition team, consisting of medical, psychosocial,
Zobel, Battles, & Ryder, 2007). A critical need remains to case management, and peer navigators. Patients were

CONTACT Patrick Ryscavage pryscavage@ihv.umaryland.edu

© 2016 Informa UK Limited, trading as Taylor & Francis Group

to meet regularly with team members at clinic visits to points included successful linkage to adult care (defined
determine ongoing barriers to transition success. as the completion of at least one adult HIV clinic visit
Patients were to be transitioned no later than their following transfer of care), time to linkage to adult care
25th birthday. Started shortly after the Project ACCESS (defined as the period of time between the last completed
protocol was created, the PACE transition protocol man- adolescent HIV clinic visit and the first adult HIV clinic
dated that patients were to be transitioned no later than provider visit), retention in adult care at 6 months post-
their 24th birthday. In the PACE transition protocol, a linkage, proportion of patients on cART pre-transfer and
transition team, including a social worker, nurse, HIV at linkage to care, HIV viral suppression (defined as
provider, and peer navigator, oversaw the enactment of HIV-1 plasma viral load (pVL) <400 copies/mL) pre-
a transition action plan. A minimum of one year prior transfer and at 6 months post-transfer, and CD4 + T
to planned transition, a transition advocate would meet cell count pre-transfer and at 12 months post-transfer.
with the patient, review the transition action plan, and Binary data were analyzed using the Fisher exact test
begin the process of identified needs to prepare for tran- and continuous data were analyzed using the Mann–
sition. Unlike Project ACCESS, in the PACE transition Whitney test. Results with a P value of < .05 were con-
protocol the transition advocate would attempt to sidered significant. Study procedures were approved by
accompany the patient for their first appointment at the Institutional Review Board at the University of Mary-
the destination provider. Both transition programs land School of Medicine.
would communicate with adult clinics to ensure the
patient had engaged in care by six months.
An increasing number of HIV-infected AYA transi-
tioning to adult care within the University healthcare Pre-HCT clinic data were available for 50 patients [31
system created an opportunity to examine HIV HCT patients with behaviorally acquired HIV (Project
outcomes within our institution. ACCESS) and 19 patients with perinatally acquired
HIV (PACE program)] and post-HCT clinic data were
available for 43 patients (27 patients with behaviorally
acquired HIV and 16 patients with perinatally acquired
A multisite retrospective cohort study was conducted HIV). The median range of available follow-up data
among HIV-infected adults who had previously attended post-HCT was 24 months (range 6–84 months). Pre-
the University of Maryland STAR TRACK clinic and transfer demographic and clinical data are presented in
thereafter attempted transfer to one of the three Univer- Table 1. Compared with those with perinatally acquired
sity of Maryland adult HIV clinics, between September HIV, patients with behaviorally acquired HIV were
2004 and September 2012. These clinics serve an older, attempted transfer to adult HIV care at an older
urban, largely socioeconomically disadvantaged popu- age, and were more likely to include men who have sex
lation, primarily from West Baltimore. All HIV-infected with men (MSM). The proportion with a history of a
patients, aged ≥ 18 years, who were determined by chart sexually transmitted infection was higher in the behav-
review to have been intentionally transitioned to one of iorally acquired group, whereas the proportion with a
the three University of Maryland adult HIV clinics, history of an opportunistic infection was higher in the
were included. “Intentional” transition was defined as perinatally acquired group.
documentation by the adolescent provider and/or HCT HCT outcomes are summarized in Figure 1. Overall,
team to formally transfer care to a specific adult HIV 43 (86%) patients were successfully liked to adult care.
clinic. All participants must have undergone attempted The median time to linkage was 98 days (range 7–579
transition to adult care with enough potential elapsed days). Though patients with behaviorally acquired HIV
time to reach at least 12 months in adult care post-tran- disease attempted transition at an older age (median 25
sition. During the period of study, there were adolescent years) compared with those with perinatally acquired
medicine-based HCT programs as described above, HIV (median 21.8 years), the groups did not differ in
though there was no formal program in place to support terms of rates of and time to successful linkage to adult
newly transitioned patients once in adult care. care. Fifty percent (25/50) of patients who attempted
The primary end point of the study was retention in HCT achieved full retention in care at 12 months post-
adult HIV care, defined as the completion of at least linkage. Among only those patients who were success-
two visits over 12 months (at least one clinic visit in fully linked to adult care, 58% (25/43) were retained in
each 6-month period) following linkage to adult HIV care at 12 months post-linkage. There were a numerically
care (Institute of Medicine, 2015; U.S. Department of higher proportion of patients with perinatally acquired
Health and Human Services, 2012). Secondary end HIV who were retained in care at 12 months, but this

Table 1. Demographic and clinical characteristics among the health care transition cohort.
Perinatal Cohort/PACE program Behavioral Cohort/Project ACCESSa Overall Pb
N 19 31 50
Gender Female: 15 (79%) Female: 17 (55%) Female: 32 (64%) NS
Male: 4 (21%) Male: 14 (45%) Male: 18 (36%)
Ethnicity AA: 19 (100%) AA: 29 (94%) AA: 48 (96%) NS
H: 2 (6%) H: 2 (4%)
Sexual orientation HS: 19 (100%) HS: 8 (58%) HS: 37 (74%) .001
MSM: 13 (93% of males) MSM: 13 (26%)
Age as of September 30, 2013 Median: 26.3 Median: 30.5 Median: 28.2 <.001
(IQR 24.0–27.8) (IQR 28.2–31.6) (IQR 26.2–31.1)
Mean: 26 Mean: 30.1 Mean: 28.4
History of STI 9 (47.4%) 29 (91%) 38 (76%) .0004
History of OI 12 (63.2%) 10 (31%) 22 (44%) .043
Mental health diagnosis 10 (52.6%) 17 (55%) 27 (54%) NS
Substance use 6 (31.6%) 18 (58%) 24 (48%) NS
Pregnancy (among females) 10 (66.7%) 10 (59%) 20 (63%) NS
Most recent CD4 (cells/mL) Mean 486 Mean 407 Mean 436 NS
Median 432 Median 318 Median 376
Most recent HIV RNA ND (%) 5/16 (31.2%) 9/31 (29%) 14/47 (29.8%) NS
Time to linkage (days) Median: 92 Median: 120 Median: 98 NS
(Range 17–579) (Range 8–551) (Range 8–579)
Age at linkage Median: 21.8 Median: 25 Median: 24.5 .007
(Range 19.2–26.9) (Range 19.1–28.2) (Range 19.1–28.2)
Notes: Abbreviations: NS: not significant; AA: African-American; H: Hispanic; HS: heterosexual; STI: sexually transmitted infection; OI: opportunistic infection; ND:
not detected.
Perinatal Cohort consists of those patients who acquired HIV through mother to child transmission.
Behavioral Cohort consists of those patients who acquired HIV through any means other than mother to child transmission.
P values obtained by the Fisher exact test or the Mann–Whitney test where appropriate.

did not reach statistical significance (Table 1). In total, Celentano, Gange, Moore, & Gallant, 2003), progression
84% of those who achieved retention in care at 12 to AIDS (Berg et al., 2005), increased risk of HIV trans-
months were also fully retained in care in the most recent mission in the community (Cohen et al., 2011), and
12-month period after an average of 30.3 months of time lower overall survival (Giordano et al., 2007; Mugavero
in adult care. There was no statistically significant differ- et al., 2009). Unfortunately, sparse objective data exist
ence between CD4 + T cell counts obtained pre-transfer to guide providers and administrators in the creation
and at 12 months post-linkage (median 347 vs. 351 cells/ of best practices for HIV HCT. This study examined sev-
mm3, respectively) among patients with available data. eral objective measures of HCT among two distinct
Time to linkage (<3 months vs. >3 months) was not groups of HIV-infected youth who transitioned to
associated with retention in care at 12 months. Finally, adult care within the same university system, but
rates of HIV viral suppression were numerically higher through different HCT programs.
at 12 months post-linkage compared with 6 months Though rates of successful linkage to adult care were
pre-transfer (35.7% vs. 56.8%) though this did not high among our study population, the range of time to
reach statistical significance. linkage was large (up to 579 days). A longer time to link-
age to care may carry a risk for health deterioration as
well as increasing community-level risk of HIV trans-
mission (assuming lack of antiretroviral use and HIV
In order to optimize HIV care, attention has recently viral suppression). In addition, rates of retention in
focused upon the HIV care continuum model, in adult HIV care following HCT were low. These results
which HIV-infected patients exist along a spectrum, imply that challenges remain in the adult-care setting
from HIV pre-diagnosis to full engagement and reten- toward optimization of the HCT process. Our pediatric,
tion in care (Gardner, McLees, Steiner, Del Rio, & Bur- adolescent, and adult clinics serve an urban, largely
man, 2011). HIV HCT can be conceptualized as a socioeconomically disadvantaged population, with high
unique appendage within the HIV care continuum, in rates of mental health diagnoses and substance use,
which there may be increased risk of dis-engagement which may in part explain the low retention rate seen
from HIV care. The costs of non-retention in HIV care in our cohort. Those who were successfully retained in
are substantial and include virologic failure (Lucas, adult care at 12 months were likely to remain engaged
Chaisson, & Moore, 1999; Mugavero, 2008; Mugavero in care over the long term (24 months in our analysis).
et al., 2012; Rastegar, Fingerhood, & Jasinski, 2003; Rob- We speculate that these results indicate that retention
bins et al., 2007), antiretroviral resistance (Sethi, in adult care at 12 months post-linkage may be a reliable

Figure 1. Linkage, retention, and HIV virologic suppression during HIV health care transition (HCT). Abbreviations: cART: combination
antiretroviral therapy; Definitions: linked to care: completed visit with adult HIV provider following care at University of Maryland Ado-
lescent HIV program; retained in care: completion of at least one clinic visit in each six-month period following transfer to adult HIV care.

marker of durable HCT success (to at least 24 months), Limitations of this study include those associated with
though this will need to be studied among a larger popu- retrospective data collection. Significantly, patients who
lation. There was a greater proportion of females in this were lost to follow-up may have engaged with another
cohort but the implications of this finding (i.e., are healthcare provider outside of the intended practice.
females more likely to attempt HCT) are difficult to con- The study sample size and the female predominance of
clude from this study alone. The degree to which gender the cohort limits generalizability of the results. This
may play a role in HCT outcomes should be explored in study was not designed to assess patient-level experi-
larger studies. Though those with perinatally and behav- ences with the HCT process, though qualitative studies
iorally acquired HIV differed in several baseline clinical have highlighted the need for a comprehensive HCT
and demographic characteristics, they demonstrated process, emphasizing an individualized approach,
similar HCT outcomes in this study, though those with coordination between providers, and addressing psycho-
perinatally acquired HIV had numerically higher rates social barriers to care (Valenzuela et al., 2011; Vijayan
of retention in adult care. These findings would be ideally et al., 2009; Wiener et al., 2007). This effort will require
examined among a larger group. Overall, these findings a robust engagement from adult HIV providers. Future
suggest that there may be no benefit to taking a “HIV studies must address the effects of novel interventions
risk group” (i.e., perinatal vs. behavioral)-based to improve the HCT process and should measure these
approach to HCT and that an individualized approach effects through quantitative HCT outcomes including
may be optimal. measures of linkage to and retention in care, as well as
The results of this study indicate that the HCT of immunologic and virologic parameters.
youth with HIV can be improved. Guidance in this
area supports the role of structural changes including
the creation of a multidisciplinary transition team, Acknowledgements
inclusive of adult providers and with clear communi- All authors contributed to the preparation of this manuscript.
cation between pediatric adult care, as well as an indivi-
dualized process addressing HIV education (including
novel aspects of the adult HIV care model), and barriers Disclosure statement
to transition such as stigma, mental health disease, cog- No potential conflict of interest was reported by the authors.
nitive disorders, and psychosocial factors (Dowshen &
D’Angelo, 2011). One notable difference between HCT
programs studied was that the PACE program included References
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