AIDS CARE, 2016

VOL. 28, NO. 5, 561–565

http://dx.doi.org/10.1080/09540121.2015.1131967

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
a
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

ABSTRACT ARTICLE HISTORY

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
KEYWORDS
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.

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

CONTACT Patrick Ryscavage pryscavage@ihv.umaryland.edu

© 2016 Informa UK Limited, trading as Taylor & Francis Group
562 P. RYSCAVAGE ET AL.
to meet regularly with team members at clinic visits to
determine ongoing barriers to transition success.
Patients were to be transitioned no later than their
25th birthday. Started shortly after the Project ACCESS
protocol was created, the PACE transition protocol man-
dated that patients were to be transitioned no later than
their 24th birthday. In the PACE transition protocol, a
transition team, including a social worker, nurse, HIV
provider, and peer navigator, oversaw the enactment of
a transition action plan. A minimum of one year prior
to planned transition, a transition advocate would meet
with the patient, review the transition action plan, and
begin the process of identified needs to prepare for tran-
sition. Unlike Project ACCESS, in the PACE transition
protocol the transition advocate would attempt to
accompany the patient for their first appointment at
the destination provider. Both transition programs
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
system created an opportunity to examine HIV HCT
outcomes within our institution.
Methods
A multisite retrospective cohort study was conducted
among HIV-infected adults who had previously attended
the University of Maryland STAR TRACK clinic and
thereafter attempted transfer to one of the three Univer-
sity of Maryland adult HIV clinics, between September
2004 and September 2012. These clinics serve an
urban, largely socioeconomically disadvantaged popu-
lation, primarily from West Baltimore. All HIV-infected
patients, aged ≥ 18 years, who were determined by chart
review to have been intentionally transitioned to one of
the three University of Maryland adult HIV clinics,
were included. “Intentional” transition was defined as
documentation by the adolescent provider and/or HCT
team to formally transfer care to a specific adult HIV
clinic. All participants must have undergone attempted
transition to adult care with enough potential elapsed
time to reach at least 12 months in adult care post-tran-
sition. During the period of study, there were adolescent
medicine-based HCT programs as described above,
though there was no formal program in place to support
newly transitioned patients once in adult care.
The primary end point of the study was retention in
adult HIV care, defined as the completion of at least
two visits over 12 months (at least one clinic visit in
each 6-month period) following linkage to adult HIV
care (Institute of Medicine, 2015; U.S. Department of
Health and Human Services, 2012). Secondary end
points included successful linkage to adult care (defined
as the completion of at least one adult HIV clinic visit
following transfer of care), time to linkage to adult care
(defined as the period of time between the last completed
adolescent HIV clinic visit and the first adult HIV clinic
provider visit), retention in adult care at 6 months post-
linkage, proportion of patients on cART pre-transfer and
at linkage to care, HIV viral suppression (defined as
HIV-1 plasma viral load (pVL) <400 copies/mL) pre-
transfer and at 6 months post-transfer, and CD4 + T
cell count pre-transfer and at 12 months post-transfer.
Binary data were analyzed using the Fisher exact test
and continuous data were analyzed using the Mann–
Whitney test. Results with a P value of < .05 were con-
sidered significant. Study procedures were approved by
the Institutional Review Board at the University of Mary-
land School of Medicine.
Results
Pre-HCT clinic data were available for 50 patients [31
patients with behaviorally acquired HIV (Project
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
HIV). The median range of available follow-up data
post-HCT was 24 months (range 6–84 months). Pre-
transfer demographic and clinical data are presented in
Table 1. Compared with those with perinatally acquired
HIV, patients with behaviorally acquired HIV were
older, attempted transfer to adult HIV care at an older
age, and were more likely to include men who have sex
with men (MSM). The proportion with a history of a
sexually transmitted infection was higher in the behav-
iorally acquired group, whereas the proportion with a
history of an opportunistic infection was higher in the
perinatally acquired group.
HCT outcomes are summarized in Figure 1. Overall,
43 (86%) patients were successfully liked to adult care.
The median time to linkage was 98 days (range 7–579
days). Though patients with behaviorally acquired HIV
disease attempted transition at an older age (median 25
years) compared with those with perinatally acquired
HIV (median 21.8 years), the groups did not differ in
terms of rates of and time to successful linkage to adult
care. Fifty percent (25/50) of patients who attempted
HCT achieved full retention in care at 12 months post-
linkage. Among only those patients who were success-
fully linked to adult care, 58% (25/43) were retained in
care at 12 months post-linkage. There were a numerically
higher proportion of patients with perinatally acquired
HIV who were retained in care at 12 months, but this
 AIDS CARE 563

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.
a
Perinatal Cohort consists of those patients who acquired HIV through mother to child transmission.
b
Behavioral Cohort consists of those patients who acquired HIV through any means other than mother to child transmission.
c
P values obtained by the Fisher exact test or the Mann–Whitney test where appropriate.

did not reach statistical significance (Table 1). In total,
84% of those who achieved retention in care at 12
months were also fully retained in care in the most recent
12-month period after an average of 30.3 months of time
in adult care. There was no statistically significant differ-
ence between CD4 + T cell counts obtained pre-transfer
and at 12 months post-linkage (median 347 vs. 351 cells/
mm3, respectively) among patients with available data.
Time to linkage (<3 months vs. >3 months) was not
associated with retention in care at 12 months. Finally,
rates of HIV viral suppression were numerically higher
at 12 months post-linkage compared with 6 months
pre-transfer (35.7% vs. 56.8%) though this did not
reach statistical significance.
Discussion
In order to optimize HIV care, attention has recently
focused upon the HIV care continuum model, in
which HIV-infected patients exist along a spectrum,
from HIV pre-diagnosis to full engagement and reten-
tion in care (Gardner, McLees, Steiner, Del Rio, & Bur-
man, 2011). HIV HCT can be conceptualized as a
unique appendage within the HIV care continuum, in
which there may be increased risk of dis-engagement
from HIV care. The costs of non-retention in HIV care
are substantial and include virologic failure (Lucas,
Chaisson, & Moore, 1999; Mugavero, 2008; Mugavero
et al., 2012; Rastegar, Fingerhood, & Jasinski, 2003; Rob-
bins et al., 2007), antiretroviral resistance (Sethi,
Celentano, Gange, Moore, & Gallant, 2003), progression
to AIDS (Berg et al., 2005), increased risk of HIV trans-
mission in the community (Cohen et al., 2011), and
lower overall survival (Giordano et al., 2007; Mugavero
et al., 2009). Unfortunately, sparse objective data exist
to guide providers and administrators in the creation
of best practices for HIV HCT. This study examined sev-
eral objective measures of HCT among two distinct
groups of HIV-infected youth who transitioned to
adult care within the same university system, but
through different HCT programs.
Though rates of successful linkage to adult care were
high among our study population, the range of time to
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
viral suppression). In addition, rates of retention in
adult HIV care following HCT were low. These results
imply that challenges remain in the adult-care setting
toward optimization of the HCT process. Our pediatric,
adolescent, and adult clinics serve an urban, largely
socioeconomically disadvantaged population, with high
rates of mental health diagnoses and substance use,
which may in part explain the low retention rate seen
in our cohort. Those who were successfully retained in
adult care at 12 months were likely to remain engaged
in care over the long term (24 months in our analysis).
We speculate that these results indicate that retention
in adult care at 12 months post-linkage may be a reliable
564 P. RYSCAVAGE ET AL.
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),
though this will need to be studied among a larger popu-
lation. There was a greater proportion of females in this
cohort but the implications of this finding (i.e., are
females more likely to attempt HCT) are difficult to con-
clude from this study alone. The degree to which gender
may play a role in HCT outcomes should be explored in
larger studies. Though those with perinatally and behav-
iorally acquired HIV differed in several baseline clinical
and demographic characteristics, they demonstrated
similar HCT outcomes in this study, though those with
perinatally acquired HIV had numerically higher rates
of retention in adult care. These findings would be ideally
examined among a larger group. Overall, these findings
suggest that there may be no benefit to taking a “HIV
risk group” (i.e., perinatal vs. behavioral)-based
approach to HCT and that an individualized approach
may be optimal.
The results of this study indicate that the HCT of
youth with HIV can be improved. Guidance in this
area supports the role of structural changes including
the creation of a multidisciplinary transition team,
inclusive of adult providers and with clear communi-
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
to transition such as stigma, mental health disease, cog-
nitive disorders, and psychosocial factors (Dowshen &
D’Angelo, 2011). One notable difference between HCT
programs studied was that the PACE program included
accompaniment of patients to first adult clinic visit by
the pediatric transition team.
Limitations of this study include those associated with
retrospective data collection. Significantly, patients who
were lost to follow-up may have engaged with another
healthcare provider outside of the intended practice.
The study sample size and the female predominance of
the cohort limits generalizability of the results. This
study was not designed to assess patient-level experi-
ences with the HCT process, though qualitative studies
have highlighted the need for a comprehensive HCT
process, emphasizing an individualized approach,
coordination between providers, and addressing psycho-
social barriers to care (Valenzuela et al., 2011; Vijayan
et al., 2009; Wiener et al., 2007). This effort will require
a robust engagement from adult HIV providers. Future
studies must address the effects of novel interventions
to improve the HCT process and should measure these
effects through quantitative HCT outcomes including
measures of linkage to and retention in care, as well as
immunologic and virologic parameters.
Acknowledgements
All authors contributed to the preparation of this manuscript.
Disclosure statement
No potential conflict of interest was reported by the authors.
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