Transition from pediatric to adult care for adolescents living with HIV in South Africa: A natural experiment and survival analysis

Zanoni, Brian C.; Archary, Moherndran; Sibaya, Thobekile; Musinguzi, Nicholas; Haberer, Jessica

doi:10.1371/journal.pone.0240918

Cited by 24 publications

(20 citation statements)

References 34 publications

(35 reference statements)

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“…This is the first transition readiness assessment developed and validated specifically for ALPH in South Africa. Currently, there are no clear guidelines on how to best determine healthcare transition readiness for ALPH in South Africa [30][31][32]. The HARTS is rapid self-administered 15-question questionnaire that could be integrated into busy clinics to determine adolescent readiness to transition or adapted to other settings to assist in healthcare transition for ALPH.…”

Section: Discussionmentioning

confidence: 99%

Development and validation of the HIV adolescent readiness for transition scale (HARTS) in South Africa

et al. 2021

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Introduction: Adolescents living with perinatally acquired HIV have low rates of retention in care and viral suppression after the transition from paediatric to adult care. In this study, we developed and validated a tool to identify adolescent transition readiness. Methods: We developed the HIV Adolescent Readiness for Transition Scale (HARTS) from June 2016 to May 2019 by iteratively adapting existing transition readiness scales for other chronic illnesses by conducting focus groups with 11 healthcare providers and 20 adolescents in South Africa. We administered a preliminary questionnaire to 131 adolescents to determine psychometric properties and assess test-retest variability. We used confirmatory factor analysis to verify the proposed scale structure using the underlying variable approach. We correlated responses to self-described transition readiness and age using linear regression. We subsequently validated the scale by prospectively administering it to 199 adolescents in a second South African setting before their transition. We then used multivariable logistic regression to assess the effects of the HARTS and relevant socio-behavioural covariates on viral suppression one year after transition. Results: We identified four domains relevant to transition readiness: disclosure, health navigation, self-advocacy and health literacy. Fifteen questions with a significant factor loading of 0.3 to 0.9 were identified. No significant test-retest variability was seen among 10% of participants. Positive correlations with self-described transition readiness were significant with the overall HARTS and domains of health navigation, self-advocacy and health literacy. In the prospective analysis, for adolescents not using drugs, each 10-point increase in the HARTS was associated with 0.62 odds of viral failure (95% CI 0.45 to 0.86; p = 0.004). The individual domains of self-advocacy (AOR 0.56; 95% CI 0.33 to 0.94; p = 0.029), disclosure (AOR 0.02; 95% CI 0.01 to 0.25; p = 0.002), health navigation (AOR 0.51; 95%CI 0.25 to 1.02; p = 0.056) and health literacy (AOR 0.37; 95% CI 0.10 to 1.30; p = 0.121) were associated with viral failure adjusting for age at antiretroviral therapy initiation, ART regimen, sex, disclosure status, and alcohol use in both analyses. Conclusions: The HARTS is a validated scale that can be used to identify which adolescents may require additional interventions prior to transitioning to adult care to improve viral suppression after transition.

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Section: Discussionmentioning

confidence: 99%

Development and validation of the HIV adolescent readiness for transition scale (HARTS) in South Africa

et al. 2021

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“…Similarly, a South African study found that youth had higher retention rates if they remained in paediatric care, when compared with a historical cohort that was transitioned to adult care [6]. These disparities highlight the importance of careful planning and follow-up when transitioning youth living with HIV from paediatric to adult care settings.…”

Section: Introductionmentioning

confidence: 99%

“…These cultural differences between clinics may have significant clinical consequences: a study analyzing HIV outcomes in a multicentre USA‐based cohort found that youth living with HIV receiving care in adult medical settings were more likely to discontinue antiretroviral therapy when compared to those receiving care in paediatric settings [5]. Similarly, a South African study found that youth had higher retention rates if they remained in paediatric care, when compared with a historical cohort that was transitioned to adult care [6]. These disparities highlight the importance of careful planning and follow‐up when transitioning youth living with HIV from paediatric to adult care settings.…”

Section: Introductionmentioning

confidence: 99%

Examining healthcare transition experiences among youth living with HIV in Atlanta, Georgia, USA: a longitudinal qualitative study

Halyard

Doraivelu

Camacho-González

et al. 2021

J. Intern. AIDS Soc.

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Introduction Virtually all youth living with HIV in paediatric/adolescent care must eventually transition to adult‐oriented HIV care settings. To date, there is limited evidence examining the perspectives of youth living with HIV longitudinally through the healthcare transition process. The objective of our study was to examine attitudes and experiences of youth living with HIV regarding healthcare transition, including potential change in attitudes and experiences over time. Methods We conducted a longitudinal qualitative interview study within a large, comprehensive HIV care centre in Atlanta, Georgia, USA between August 2016 and October 2019.We interviewed 28 youth living with HIV as part of a longitudinal observational cohort study of youth undergoing healthcare transition. We conducted qualitative interviews both immediately prior to, and one year following the transition from paediatric to adult‐oriented care. Results Six distinct themes emerged from interviews conducted with youth living with HIV pre‐transition: (1) reluctance to transition; (2) paediatric spaces as welcoming, and adult spaces as unwelcoming; (3) varying levels of preparation for transition; and (4) expectation of autonomy in the adult clinic. Analysis of post‐transition interviews with the same youth demonstrated: (1) inconsistencies in the transition experience; (2) fear and anxiety about transition quelled by experience; (3) varying reactions to newfound autonomy and (4) communication as the most valuable facilitator of successful transition. Conclusions This study’s longitudinal perspective on the healthcare transition experience yields insights that can be incorporated into programming targeting this critically important population. Although our study was conducted in a USA‐based clinic with co‐located paediatric and adult care services, many of our findings are likely to have relevance in other settings as well. Interventions aiming to improve HIV care engagement through transition should seek to enhance patient–provider communication in both paediatric and adult clinics, improve preparation of patients in paediatric clinics and ease patients gradually into autonomous disease management.

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“…South Africa has the largest antiretroviral therapy (ART) program along with highest burden of adolescents living with HIV (ALHIV) in the world [ 1 ]. Survivors of perinatally acquired HIV are now reaching adolescence and beyond, yet the majority of adolescents are poorly prepared for the transition from pediatric to adult care services [ 2 , 3 ]. An estimated 320,000 adolescents with perinatally acquired HIV will transfer from pediatric-based or adolescent-based clinics to adult services in the next 10 years in South Africa [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

Mobile Phone–Based Intervention Among Adolescents Living With Perinatally Acquired HIV Transitioning from Pediatric to Adult Care: Protocol for the Interactive Transition Support for Adolescents Living With HIV using Social Media (InTSHA) Study

Zanoni¹,

Archary²,

Sibaya³

et al. 2022

JMIR Res Protoc

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Background Adolescents living with perinatally acquired HIV often have poor retention in care and viral suppression during the transition from pediatric to adult-based care. Objective The aim of this study is to evaluate a mobile phone–based intervention, Interactive Transition Support for Adolescents Living With HIV using Social Media (InTSHA), among adolescents living with perinatally acquired HIV as they transition from pediatric to adult care in South Africa. Methods InTSHA uses encrypted, closed group chats delivered via WhatsApp (Meta Platforms Inc) to develop peer support and improve communication between adolescents, their caregivers, and health care providers. The intervention is based on formative work with adolescents, caregivers, and health care providers and builds on several existing adolescent support programs as well as the Social-ecological Model of Adolescent and Young Adult Readiness for Transition (SMART). The final InTSHA intervention involves 10 modules conducted weekly through moderated WhatsApp group chats with adolescents and separately with their caregivers. We will randomly assign 80 South African adolescents living with perinatally acquired HIV who are aware of their HIV status and aged between 15 and 19 years to receive either the intervention (n=40) or standard of care (n=40). Results We will measure acceptability of the intervention as the primary outcome and evaluate feasibility and preliminary effectiveness for retention in care and viral suppression after completion of the intervention and at least 6 months after randomization. In addition, we will measure secondary outcomes evaluating the impact of the InTSHA intervention on peer support, self-esteem, depression, stigma, sexual education, connection to health care providers, and transition readiness. Enrollment began on April 15, 2021. As of December 31, 2021 a total of 78 out of expected 80 participants have been enrolled. Conclusions If successful, the intervention will be evaluated in a fully powered randomized controlled trial with a larger number of adolescents from urban and rural populations to further evaluate the generalizability of InTSHA. Trial Registration ClinicalTrials.gov NCT03624413; https://clinicaltrials.gov/ct2/show/NCT03624413 International Registered Report Identifier (IRRID) DERR1-10.2196/35455

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Transition from pediatric to adult care for adolescents living with HIV in South Africa: A natural experiment and survival analysis

Cited by 24 publications

References 34 publications

Development and validation of the HIV adolescent readiness for transition scale (HARTS) in South Africa

Development and validation of the HIV adolescent readiness for transition scale (HARTS) in South Africa

Examining healthcare transition experiences among youth living with HIV in Atlanta, Georgia, USA: a longitudinal qualitative study

Mobile Phone–Based Intervention Among Adolescents Living With Perinatally Acquired HIV Transitioning from Pediatric to Adult Care: Protocol for the Interactive Transition Support for Adolescents Living With HIV using Social Media (InTSHA) Study

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