Supporting youth living with HIV during the transition from pediatric/adolescent- to adult-oriented HIV care: Protocol for development and pilot implementation of iTransition (Preprint)

BACKGROUND In the United States, adolescents and young adults are disproportionately affected by HIV and have poorer HIV-related health outcomes than adults. Health care transition from pediatric/adolescent- to adult-oriented HIV care is associated with disruptions to youths’ care retention, medication adherence, and viral suppression. Yet, no evidence-based interventions exist to improve health care transition outcomes for youth living with HIV. OBJECTIVE There are two phases of this project. Phase 1 involves the iterative development and usability testing of a Social Cognitive Theory-based mHealth (mobile health) HIV health care transition intervention (iTransition). In Phase 2, we will conduct a pilot implementation trial to assess iTransition’s feasibility and acceptability as well as to establish preliminary efficacy among youth and provider participants. METHODS The iterative Phase 1 development process will involve in-person and virtual meetings a Design Team comprised of youth living with HIV and clinic providers. The Design Team will both inform content and provide feedback on the look, feel, and process of the iTransition intervention. In Phase 2, we will recruit 100 transition-eligible youth across two clinical sites in Atlanta, GA and Philadelphia, PA to participate in the historical control group (n=50; data collection only) or the intervention group (n=50) in a pilot implementation trial. We will also recruit 28 provider participants across the pediatric/adolescent and adult clinics in the two sites. Data collection will include, electronic medical chart abstraction for clinical outcomes, and surveys and interviews related to demographic and behavioral characteristics, Social Cognitive Theory constructs, and intervention feasibility, acceptability, and usage. Analyses will compare historical control and intervention groups in terms of health care transition outcomes, including adult care linkage [primary] and care retention and viral suppression [secondary]. RESULTS Phase 1 participant recruitment began in November 2019. Phase 2 data collection is anticipated to end in August 2022. CONCLUSIONS The development and pilot trial of the iTransition intervention will fill an important gap in understanding the role of mHealth interventions to support health care transition outcomes for youth living with HIV. CLINICALTRIAL ClinicalTrials.gov Identifier NCT04383223; https://clinicaltrials.gov/ct2/show/NCT04383223

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An Intervention for the Transition From Pediatric or Adolescent to Adult-Oriented HIV Care: Protocol for the Development and Pilot Implementation of iTransition

JMIR Research Protocols ◽

10.2196/24565 ◽

2021 ◽

Vol 10 (4) ◽

pp. e24565

Author(s):

Amanda E Tanner ◽

Nadia Dowshen ◽

Morgan M Philbin ◽

Kelly L Rulison ◽

Andres Camacho-Gonzalez ◽

...

Keyword(s):

Data Collection ◽

Social Cognitive ◽

Cognitive Theory ◽

Phase 1 ◽

Hiv Care ◽

Phase 2 ◽

Pilot Implementation ◽

Youth Living With Hiv ◽

Living With Hiv ◽

Implementation Trial

Background In the United States, adolescents and young adults are disproportionately affected by HIV and have poorer HIV-related health outcomes than adults. Health care transition (HCT) from pediatric or adolescent to adult-oriented HIV care is associated with disruptions to youths’ care retention, medication adherence, and viral suppression. However, no evidence-based interventions exist to improve HCT outcomes for youth living with HIV. Objective There are 2 phases of this project. Phase 1 involves the iterative development and usability testing of a Social Cognitive Theory–based mobile health (mHealth) HIV HCT intervention (iTransition). In phase 2, we will conduct a pilot implementation trial to assess iTransition’s feasibility and acceptability and to establish preliminary efficacy among youth and provider participants. Methods The iterative phase 1 development process will involve in-person and virtual meetings and a design team comprising youth living with HIV and health care providers. The design team will both inform the content and provide feedback on the look, feel, and process of the iTransition intervention. In phase 2, we will recruit 100 transition-eligible youth across two clinical sites in Atlanta, Georgia, and Philadelphia, Pennsylvania, to participate in the historical control group (n=50; data collection only) or the intervention group (n=50) in a pilot implementation trial. We will also recruit 28 provider participants across the pediatric or adolescent and adult clinics at the two sites. Data collection will include electronic medical chart abstraction for clinical outcomes as well as surveys and interviews related to demographic and behavioral characteristics; Social Cognitive Theory constructs; and intervention feasibility, acceptability, and use. Analyses will compare historical control and intervention groups in terms of HCT outcomes, including adult care linkage (primary), care retention, and viral suppression (secondary). Interview data will be analyzed using content analysis to understand the experience with use and acceptability. Results Phase 1 (development) of iTransition research activities began in November 2019 and is ongoing. The data collection for the phase 2 pilot implementation trial is expected to be completed in January 2023. Final results are anticipated in summer 2023. Conclusions The development and pilot implementation trial of the iTransition intervention will fill an important gap in understanding the role of mHealth interventions to support HCT outcomes for youth living with HIV. International Registered Report Identifier (IRRID) DERR1-10.2196/24565

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Faculty Opinions recommendation of Health care transition for youth living with HIV/AIDS.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.13357047.14726338 ◽

2011 ◽

Author(s):

Lynne Mofenson

Keyword(s):

Health Care ◽

Care Transition ◽

Health Care Transition ◽

Youth Living With Hiv ◽

Living With Hiv ◽

Hiv Aids

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Health Care Transition for Youth Living With HIV/AIDS

PEDIATRICS ◽

10.1542/peds.2011-0068 ◽

2011 ◽

Vol 128 (4) ◽

pp. 762-771 ◽

Cited By ~ 95

Author(s):

N. Dowshen ◽

L. D'Angelo

Keyword(s):

Health Care ◽

Care Transition ◽

Health Care Transition ◽

Youth Living With Hiv ◽

Living With Hiv ◽

Hiv Aids

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Group versus individual antenatal and first year postpartum care: Study protocol for a multi-country cluster randomized controlled trial in Kenya and Nigeria

Gates Open Research ◽

10.12688/gatesopenres.12867.2 ◽

2019 ◽

Vol 2 ◽

pp. 56 ◽

Cited By ~ 1

Author(s):

Mark M. Kabue ◽

Lindsay Grenier ◽

Stephanie Suhowatsky ◽

Jaiyeola Oyetunji ◽

Emmanuel Ugwa ◽

...

Keyword(s):

Health Care ◽

Randomized Controlled Trial ◽

Data Collection ◽

Pregnant Women ◽

Controlled Trial ◽

Phase 1 ◽

First Year ◽

Phase 2 ◽

Randomized Controlled ◽

Cluster Randomized

Background: Antenatal care (ANC) in many low- and middle-income countries is under-utilized and of sub-optimal quality. Group ANC (G-ANC) is an intervention designed to improve the experience and provision of ANC for groups of women (cohorts) at similar stages of pregnancy. Methods: A two-arm, two-phase, cluster randomized controlled trial (cRCT) (non-blinded) is being conducted in Kenya and Nigeria. Public health facilities were matched and randomized to either standard individual ANC (control) or G-ANC (intervention) prior to enrollment. Participants include pregnant women attending first ANC at gestational age <24 weeks, health care providers, and sub-national health managers. Enrollment ended in June 2017 for both countries. In the intervention arm, pregnant women are assigned to cohorts at first ANC visit and receive subsequent care together during five meetings facilitated by a health care provider (Phase 1). After birth, the same cohorts meet four times over 12 months with their babies (Phase 2). Data collection was performed through surveys, clinical data extraction, focus group discussions, and in-depth interviews. Phase 1 data collection ended in January 2018 and Phase 2 concludes in November 2018. Intention-to-treat analysis will be used to evaluate primary outcomes for Phases 1 and 2: health facility delivery and use of a modern method of family planning at 12 months postpartum, respectively. Data analysis and reporting of results will be consistent with norms for cRCTs. General estimating equation models that account for clustering will be employed for primary outcome analyzes. Results: Overall 1,075 and 1,013 pregnant women were enrolled in Nigeria and Kenya, respectively. Final study results will be available in February 2019. Conclusions: This is the first cRCT on G-ANC in Africa. It is among the first to examine the effects of continuing group care through the first year postpartum. Registration: Pan African Clinical Trials Registry PACTR201706002254227 May 02, 2017

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P514 Health Care Transition outcomes in inflammatory bowel disease: an international Delphi study

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjy222.638 ◽

2019 ◽

Vol 13 (Supplement_1) ◽

pp. S370-S370

Author(s):

G van den Brink ◽

M van Gaalen ◽

L de Ridder ◽

J Escher ◽

J van der Woude

Keyword(s):

Health Care ◽

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Delphi Study ◽

Care Transition ◽

Health Care Transition ◽

Transition Outcomes ◽

Inflammatory Bowel

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Development and Content Validation of the Health Care Transition Outcomes Inventory

Diabetes ◽

10.2337/db18-68-lb ◽

2018 ◽

Vol 67 (Supplement 1) ◽

pp. 68-LB

Author(s):

JESSICA PIERCE ◽

TIM WYSOCKI ◽

ANTHONY GANNON

Keyword(s):

Health Care ◽

Care Transition ◽

Content Validation ◽

Health Care Transition ◽

Transition Outcomes

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Group versus individual antenatal and first year postpartum care: Study protocol for a multi-country cluster randomized controlled trial in Kenya and Nigeria

Gates Open Research ◽

10.12688/gatesopenres.12867.1 ◽

2018 ◽

Vol 2 ◽

pp. 56 ◽

Cited By ~ 5

Author(s):

Mark M. Kabue ◽

Lindsay Grenier ◽

Stephanie Suhowatsky ◽

Jaiyeola Oyetunji ◽

Emmanuel Ugwa ◽

...

Keyword(s):

Health Care ◽

Randomized Controlled Trial ◽

Data Collection ◽

Pregnant Women ◽

Controlled Trial ◽

Phase 1 ◽

First Year ◽

Phase 2 ◽

Randomized Controlled ◽

Cluster Randomized

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“It’s about making adolescents in charge of their health”: policy-makers’ perspectives on optimizing the health care transition among adolescents living with HIV in Kenya

AIDS Care ◽

10.1080/09540121.2021.1971606 ◽

2021 ◽

pp. 1-8

Author(s):

Katherine Shulock ◽

Kristin Beima-Sofie ◽

Haris Apriyanto ◽

Irene Njuguna ◽

Caren Mburu ◽

...

Keyword(s):

Health Care ◽

Health Policy ◽

Care Transition ◽

Policy Makers ◽

Health Care Transition ◽

Living With Hiv

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A program of transition to adult care for sickle cell disease

Hematology ◽

10.1182/hematology.2019000054 ◽

2019 ◽

Vol 2019 (1) ◽

pp. 496-504 ◽

Cited By ~ 2

Author(s):

Anjelica C. Saulsberry ◽

Jerlym S. Porter ◽

Jane S. Hankins

Keyword(s):

Health Care ◽

Emerging Adults ◽

Transition Programs ◽

Care Utilization ◽

Care Transition ◽

Adult Care ◽

Health Care Transition ◽

Transition Outcomes ◽

Core Elements ◽

Acute Care Utilization

Abstract Most children with sickle cell disease (SCD) today survive into adulthood. Among emerging adults, there is a marked increase in acute care utilization and a rise in mortality, which can be exacerbated by not establishing or remaining in adult care. Health care transition programs are therefore essential to prepare, transfer, and integrate emerging adults in the adult care setting. The Six Core Elements of Health Care Transition, created by the Center for Health Care Transition Improvement, define the basic components of health care transition support as follows: (1) transition policy, (2) tracking and monitoring progress, (3) assessing transition readiness, (4) planning for adult care, (5) transferring to adult care, and (6) integrating into adult care. Programs that implement the Six Core Elements have experienced significant declines in care abandonment during adolescence and young adulthood and higher early adult care engagement. Most of the core transition activities are not currently reimbursable, however, posing a challenge to sustain transition programs. Ongoing studies are investigating interventions in comparative effectiveness trials to improve health-related quality of life and reduce acute care utilization among emerging adults with SCD. Although these studies will identify best practices for health care transition, it is also important to define how the transition outcomes will be measured, as no consensus definition exists for successful health care transition in SCD. Future research is needed to define best practices for health care transition, systematically assess transition outcomes, and revise payment models to promote sustainability of health care transition programs.

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