# Developing an Instrument to Assess Adolescent Risk for Disengagement from HIV Care

> **NIH NIH K23** · INDIANA UNIVERSITY INDIANAPOLIS · 2020 · $156,739

## Abstract

PROJECT SUMMARY / ABSTRACT
HIV is a leading cause of death among adolescents globally, due to management challenges which result in
poorer outcomes in the care cascade as compared to adults, including poor rates of retention in care. Reasons
for disengagement from care have not been well-explored among adolescents, and are expected to be complex
and heterogeneous. Interventions to improve retention can be resource intensive and are challenging to
implement broadly. There is an urgent need to identify adolescents at high risk for disengagement from HIV care,
and to intervene early to retain these adolescents, in order to prevent deaths and optimize treatment outcomes.
Dr. Leslie Enane aims to become a productive independent investigator in HIV implementation science, focused
on improving pediatric and adolescent outcomes in the HIV care cascade, particularly in resource-limited
settings. The objectives of this application are to develop those career skills by 1) using a mixed-methods
approach to investigate factors underlying disengagement among adolescents with HIV in East Africa, and 2)
developing an instrument to identify adolescents at high risk for disengagement, for whom proactive interventions
may support retention. This project will utilize the well-developed epidemiologic and implementation science
infrastructure of the NIH-funded International Epidemiologic Database to Evaluate AIDS East Africa Consortium
(IeDEA-EA). Dr. Enane will be mentored by Dr. Rachel Vreeman, Dr. Kara Wools-Kaloustian, Dr. J. Dennis
Fortenberry, Dr. Edith Apondi, and Prof. Winstone Nyandiko. Dr. Enane will first refine a conceptual model for
adolescent disengagement from HIV care. She will achieve this through systematic literature review; qualitative
inquiry with disengaged adolescents, caregivers, and healthcare workers; and synthesis of these findings with
quantitative work in IeDEA-EA defining predictors of adolescent outcomes in the care cascade. Next, she will
work from this conceptual model to develop and pilot a reliable, developmentally- and culturally-relevant
instrument to assess adolescent risk for disengagement from HIV care, the Clinical Assessment for Retention
and Engagement (CARE). CARE will be designed for utility in busy clinical settings, to identify adolescents at
high risk for disengagement, for whom early interventions should be considered. Dr. Enane will develop an
evidence-based algorithm to support clinical evaluation and intervention for adolescents at risk for
disengagement. The algorithm will link positive screening results in domains of CARE to administration of valid
clinical questionnaires, and/or appropriate interventions, to optimally support clinical management of adolescents
at risk for disengagement. Completing this work with strong mentorship and access to experts in implementation
science in IeDEA-EA, Dr. Enane will develop independence as a physician-scientist in pediatric HIV
implementation science, gaining expertise in 1) ...

## Key facts

- **NIH application ID:** 9975907
- **Project number:** 5K23HD095778-03
- **Recipient organization:** INDIANA UNIVERSITY INDIANAPOLIS
- **Principal Investigator:** Leslie Anne Enane
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $156,739
- **Award type:** 5
- **Project period:** 2018-08-01 → 2023-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9975907

## Citation

> US National Institutes of Health, RePORTER application 9975907, Developing an Instrument to Assess Adolescent Risk for Disengagement from HIV Care (5K23HD095778-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9975907. Licensed CC0.

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