Table 1 Study description table

Davies et al., 2017 [34]

• Cape Town, South Africa

• Longitudinal

• PHIV

• Setting: two hospitals and two primary care clinics

• M_age at transition = 10–19 years

• n = 460

• Sex = 53% female

• Duration of follow up = 3.3 years

Evaluated longitudinal outcomes of ALWH post-HCT and found that 81% had a successful transition. One year later, retention was 90% but declined to 84% at 3 years. Retention was lower in adolescents 15–19-year compared with those who were 10–14-years of age up to 2 years post-HCT although at 3 years figures for both groups were similar.

78% percent of patients were virologically suppressed during transition 64% of these patients had CD4 > 500 cells/μL.

None reported

Fish et al., 2014 [39]

• UK & Ireland

• Longitudinal

• PHIV

• Setting: outpatient clinics, data from network of health professionals

• Median age at HCT for 11 deaths = 17 years

• Median age at death after HCT = 21 years

• Race/ethnicity: 82% Black African; 18% White European

• n = 248

• Sex = not reported

Not applicable

At death, the median CD4 count was 27 cells/μL. While 5 patients were on ART, only 2 had a VL < 50 HIV-1 RNA copies/mL.

Conducted a multicenter audit to assess the number of deaths and associated factors among PHIV after HCT. A total of 11 participants died during assessment period of 5 years. Causes included suicide (n = 2), AIDS (n = 7) and bronchiectasis (n = 1). Cause of death for one patient was unknown. 82% had poor adherence beginning in pediatric care, were ART resistant, and had comorbid mental health diagnoses.

Griffith et al., 2019 [40]

• United States

• Retrospective cohort

• PHIV and nPHIV with at least one visit in adult clinic after HCT

• Setting: 2 urban HIV care programs

• N = 89

• Sex = 62% female

• Race = 81% African American

• 75% on ARTs before HCT

Evaluated retention in care, CD4 count and VL post-HCT. A total of 79 (89%) patients were successfully retained in care one year after transition, of which 53 had stable or improved viral loads.

57% of participants had viral loads less than 400 copies/mL pre-transition. 51% of patients were virally suppressed post-HCT.

None reported

Haghighat et al., 2019 [35]

• Eastern Cape province, South Africa

• Longitudinal

• Prospective cohort

• Setting: health care facilities

• N = 951

• Sex = 54.3% female

• Median age at study enrollment = 13 years

• 26.1% horizontally infected

• Median age at ART initiation = 9 years

Characterized clinical outcomes and mobility through VL, mortality, and LTFU. 550 persons (57.8%) started ART in a pediatric setting, of which 35.3% transitioned to adult care. Median age at transition was 14 years old. Of the 35.3% to transition, 91.2% were retained in care 18 months later. 84 ALWH (8.8%) were LTFU, defined as missing all appointments within the past 3 months and being untraceable.

Of the 143 ALWH to transition to adult care who had pre and post HCT VL data, there was no change in .

Out of those who transitioned to adult care 7 died (3.6%).

Hansudewechakul et al., 2015 [37]

• Chiang Rai province, Thailand

• Longitudinal

• PHIV

• Setting: public hospital

• Age = not reported

• Race/ethnicity: 100% Thai

• n = 67

• Sex = not reported

• 1–5 years post-HCT

Evaluated the outcomes of PHIV after completion of a voluntary HCT camp intended to prepare PHIV for adult care. PHIV were transitioned to adult care in groups rather than individually to facilitate adherence modeling and social support. A total of 73% of ALWH were retained in care 2 to 5 years post-HCT depending on when they were enrolled., while13% were LTFU.

Pre-HCT biologic data were not reported. Post-HCT, 37 had a VL < 40. The remaining youth had VLs between 40 and 1999 (n = 6) and > 2000 (n = 9).

Four participants died post-HCT.

Hussen et al., 2017 [41]

• Atlanta, Georgia, United States

• Retrospective cohort study

• PHIV & BHIV

• Setting: HIV clinic, public hospital

• Median age at last pediatric visit = 23.8 years (22.0–24.8 years)

• n = 72 (last pediatric visit)

• Sex = 62. 5% male

• Race/ethnicity: 93% Black African; 3% Mixed; 2% White

Evaluated retention in HIV pre-, during and post-HCT. Of 72 ALWH, 89% were retained in HIV care one year post-HCT and 56% were in care 2 years post-HCT. ALWH with suppressed viremia during the last pediatric visit were more likely to be suppressed post-HCT.

Of all transitioned ALWH, 49 had suppressed viremia one year post-HCT, or 53% of ALWH.

None reported

Izzo et al., 2018 [31]

• Brescia, Northern Italy.

• Retrospective

• PHIV

• Setting: outpatient clinic

• M_age at HCT =18 years

• n = 24

• Sex = 37.5% male

• 75% were Italian.

None reported

Described the viro-immunology outcome of PHIV. Pre-HCT, the median CD4+ T-cell count was 534 cell/lL, 62.5% had HIV-RNA < 50 copies/mL and 25% had HIV-RNA 50–10,000 copies/mL, and 12.5% had HIV-RNA > 10, 000 copies/mL. Post-HCT, 5 patients were LTFU (median 52 months), median CD4+ T-cell count was 716 cell/lL, 100% had HIV-RNA < 50 copies/mL, 0% had HIV-RNA 50–10,000 copies/mL and HIV-RNA > 10, 000 copies/mL.

None reported

Judd et al., 2017 [38]

• United Kingdom

• Longitudinal

• PHIV

• Setting: clinic settings, cohort data

• Median age pre-HCT = 17 years (16–18 years)

• Race/ethnicity: 80% Black African; 11% White; 9% other

• n = 271

• Sex = 53% female

• 15.4 years duration of total follow up

Not reported

Median CD4+ count at 12 months pre-HCT was 465 cells/mm³ and post-HCT was 460 cells/mm³. Pre-HCT, 21% had CD4 < 200 cells/mm3 at least once in the 12-month periods, post-HCT 23% had CD4 < 200 cells/mm3 at least once in the 12-month periods. For those on ART pre-HCT 28% had two consecutive VLs (≤6 months apart) > 400 copies/mL or one VL > 10,000 copies/mL in the 12 month periods, post-HCT 29% had two consecutive VLs (≤6 months apart) > 400 copies/mL or one VL > 10,000 copies/mL in the 12 month. Pre- HCT, 47% had two consecutive VLs > 400 copies/mL or one VL > 10,000 copies/mL in the 12-month periods regardless of ART status which was 52% post-HCT.

Clinic records indicated that 7 participants died in adult care. Causes of death were AIDS (n = 3), renal failure (n = 1), leukoencephalopathy (n = 1), pulmonary tuberculosis (n = 1). The cause of death was unknown for one youth. 71% had periods when they were not receiving ART prior to death.

Kakkar et al., 2016 [30]

• Québec, Canada

• Descriptive

• PHIV

• Setting: HIV clinic

• M_age = 22 (19–25 years) n = 54

• Sex = 40% male

• n = 45

• Race/ethnicity: not reported

• M = 3.6 years post HCT (range 1.1–6.8 years)

The researchers reviewed the clinic records of PHIV who had transitioned to adult care. Of the 25 who agreed to study participation, 76% were retained in HIV care at follow-up of one year post-HCT or later and eight were LTFU.

Pre-HCT, 64% had a CD4 count > 500 cells/mm³, 16% between 200 and 500 cells/mm³, and 20% were immunosuppressed with a CD4 count < 200 cells/mm³. Moreover, fewer PHIV had VLs greater than 500 cells/mm³ (decreased from 64 to 29%). When PHIV were asked how often they missed drug doses in the past month, 40% reported no missed doses, 28% reported occasional missed doses, 16% reported frequently missed doses, and 12% had stopped all ARV therapy. Of the 16 PHIV for which VL data were available, 9 remained undetectable, one had an increase in VL to a detectable status, and 6 remained detectable.

Of the 45 who transitioned, 4 were deceased.

Kowalska et al., 2019 [33]

• Warsaw, Poland

• Cross-sectional

• Setting: pediatric health care

• N = 30/120 transferred to adult care

• Median age at transfer = 19.1 years

• Median age at diagnosis = 53 months

• Median post-HCT follow-up = 1.9 (0.7–4.5) years

Most ALWH (83%) were retained in care at a median follow up time of 1.9 years post-HCT. Four patients were LTFU, three who were not virally suppressed in pediatric care and one who was virally suppressed in pediatric care.

Twenty-one percent were virologically suppressed pre-HCT. Of these, seventeen maintained suppressed viremia post-HCT. Among ALWH who were not virologically suppressed pre-HCT (n = 9), three achieved suppression in adult care.

One out of the 9 patients who were virologically non-supressed in pediatric care died post-HCT from drug overdose.

Maturo et al., 2015 [42]

• Miami, Florida, United States

• Longitudinal & Descriptive

• BHIV & PHIV

• Setting: HIV clinic, university hospital

• M_age at HCT follow up = 17.55 (18–29 years)

• Race/ethnicity: 84% African American; 13% Hispanic; 3% Mixed race

• n = 38

• Sex = 44.8% males, 2.6% transgender

• Did not report years post-HCT

Data are from a HCT program for PHIV (11%) and BHIV (89%) that consisted of five distinct phases. The authors reviewed the medical records of individuals who participated in the program and results indicated that 47% completed the program and were retained in adult care 1 year post-HCT. Among those who did not complete the program, 8% were still in the program.

Pre- HCT, ALWHs’ mean CD4+ count was 479 cells/mm³ (range = 4–1255) and their mean HIV RNA level was 18,528 copies/mL (range: 130–114,800). About 26% reported adherence issues. Post-HCT, 22% reported adherence issues. Their mean CD4+ count was 604 cells/mm³ (range = 185–1124) and their mean HIV RNA level was 11,488 copies/mL. Follow-up data were only available for seven of the non-completers and indicated that 29% reported adherence issues. Their mean CD4+ count was 603 cells/mm³ (range = 4–1, 1255) and their mean HIV RNA level was 15,294 copies/mL (range: 395–66,683).

None reported

Tassiopoulos et al., 2019 [43]

• United States

• Cohort study

• PHIV

• N = 455

• Median age = 21.5 years

• Sex = 61% female

• Race = 68% Black

124 participants transitioned to adult care. Mean age at last pediatric visit was 21.7 years. 59% of those who transitioned missed an ARV dose in the past 3 months, as compared to 60% who did not transition.

Median CD4 count was 402 cells/mm³ for those who transitioned compared to 535 cells/mm³ for all 455 patients prior. Of the 124 who transitioned, 56% had at least one instance of unsuppressed VL prior to transition compared to 31% with an unsuppressed VL within a year post transition

None reported

Westling et al., 2016 [36]

• Stockholm, Sweden

• Cross-sectional & Longitudinal

VPHIV & BHIV

• Setting: transition clinic, university hospital

• M_age = 19 (17–25 years)

• n = 34

• Sex = 50% male

• 2 years post-HCT

Described a HCT program in which PHIV/BHIV met with physicians, nurses and counselors from a pediatric clinic for 1–2 years. Twenty-nine reported at the 2-year follow-up, of which 23 underwent HCT.

Prior to HCT, 88% were on ART for a median of 9 years, 6% experienced treatment interruption, and 75% had a history of adherence issues. Participants experienced mutations against at least two drug classes (25%), treatment resistance requiring changes to medication (40%), only 14% had a CD4 cell count that was less than < 350 × 106/L, and 90% (27 of 30) of those on ART had a VL of < 50 copies/mL. At the 2-year follow-up, 90% (26 of 29) of those on ART had a VL of < 50 copies/mL, 92% had a VL < 50 copies/mL, and 19% experienced treatment interruptions.

None reported

Weijsenfeld et al., 2016 [32]

• Amsterdam, Netherlands

• Longitudinal

• PHIV & BHIV

• Setting: university medical centers

• M_age at diagnosis = 8 (3–13 years); M_age at transition = 19 (18–20 years)

• n = 58

• Sex = 42% male

• 1–6 years post-HCT

Evaluated virological and social outcomes of PHIV/BHIV prior to and after HCT, and identified factors associated with VF. Results indicated that 86% were retained in HIV care and 14% were LTFU at a mean follow-up time of 1.5 years.

Youth reporting low (OR, 3.32 [95% CI, 1.39–7.92], P = .007) or unknown (OR, 6.23 [95% CI, 2.04–18.9]) educational attainment were more likely than their peers with higher levels of attainment to experience VF. Youth who lacked autonomy in treatment adherence at transition were more likely than their peers with autonomy to experience VF (OR, 6.89 [95% CI, 2.57–18.5], P < .001). Approximately 50% of all ALWH in this study experienced VF in pediatric care and of these, 20 (34%) also experienced VF in adult care. For those without VF experiences in pediatric care, only 2 (3%) experienced VF as adults.

None reported

Wiener et al., 2011 [44]

• United States

• Mixed methods: pre/post HCT

• PHIV & BHIV

• Setting: medical research facility

• M_age = 22 (18–31 years)

• n = 59

• Sex = 51% male

• 4 years post clinic closure

Described ALWH (18+ years) participating in a pediatric HIV care program. Data were gathered between September and December 2008, which is the time when the program was terminated. Follow-up occurred in 2008. Results indicated that 55 ALWH (93%) had been retained in HIV care, of which 42 (71%) transitioned to adult care. Of those who experienced HCT, 45% reported that the transition was more difficult than expected; 86% were on ART; and 45% reported difficulties adhering to treatment.

There appeared to be a trend towards lower CD4 counts for those who experienced HCT with pre-HCT mean of 575 and post-HCT mean of 504. The difference in change was not significant.

Xia et al., 2018 [45]

• New York City, United States

• Retrospective pre-post study

• Matched exposed/unexposed nested cohort study

• PHIV

• Setting: NYC HIV surveillance registry

• N = 1791

• Sex = 52.7% female

• Mean age of transition = 22 years old

Reported transition duration, retention in care, and pre-post CD4 cell count. A total of 735 ALWH transitioned to adult care. Of those for which 3-year follow-up data were available after the first adult visit, 367 ALWH, (94.7%) remained in care.

One year post-HCT, 337/694 (48.6%) were virally suppressed. In year 2, 301/589 (51.1%) were suppressed, and in year 3247/477 (51.8%) were suppressed.

41 persons died in the first year of transition. 82.9% were from HIV-related diseases.