Detecting Disengagement From HIV Care Before It Is Too Late

Development and Preliminary Validation of a Novel Index of Engagement in HIV Care

Mallory O. Johnson, PhD; Torsten B. Neilands, PhD; Kimberly A. Koester, PhD; Troy Wood, MA; John A. Sauceda, PhD; Samantha E. Dilworth, MS; Michael J. Mugavero, MD; Heidi M. Crane, MD; Rob J. Fredericksen, PhD; Kenneth H. Mayer, MD; William C. Mathews, MD; Richard D. Moore, MD; Sonia Napravnik, PhD; Katerina A. Christopoulos, MD, MPH


J Acquir Immune Defic Syndr. 2019;81(2):145-152. 

In This Article

Abstract and Introduction


Background: Engagement in care is critical to achieving and sustaining optimal benefits of efficacious antiretroviral therapies for HIV infection. Current metrics of engagement in care, including problematic patterns of retention in care, adherence to treatment, and viral suppression, are often detected late in the disengagement process. We sought to develop and validate a patient-centered screener of engagement in care that can be used to identify deficits in patient perceptions of engagement before the development of poor outcomes, including loss to follow-up, treatment nonadherence, virologic failure, and the resulting increased likelihood of HIV-associated morbidity and mortality and onward transmission of HIV.

Setting and Methods: Using input from patients, providers, and researchers through in-person focus groups and an online Delphi process, we developed a self-report measure of engagement in care that was validated with 3296 patients from 7 clinics across the United States.

Results: Results supported a single dimension of engagement in care measured by 10 items. Lower scores on the HIV Index were related to higher depression and anxiety symptoms, greater use of alcohol and stimulants, and increased likelihood of reporting internalized HIV stigma. Higher Index scores were positively associated with self-report measures of antiretroviral therapy adherence, corroborative clinic records documenting appointment attendance, and increased likelihood of recent viral load suppression.

Conclusions: The HIV Index offers promise as a patient-centered diagnostic and prognostic screener for engagement in care that can be used to trigger interventions to promote better clinical outcomes for persons living with HIV.


The increasing availability of potent antiretroviral therapies (ART) offers the promise of decreased HIV-associated morbidity, mortality, and substantially lower likelihood of HIV transmission to others.[1–4] However, many health care systems tasked with providing ART and ongoing care for HIV-infected patients can improve to achieve and sustain optimal outcomes.[5]

Because treatment success of ART in the current "treat all" era emphasizes rapid uptake, ongoing adherence, and lifelong persistence with ART,[5] promoting sustained engagement in care is paramount.[6] Historically, engagement in HIV care has been defined through indicators such as self-reported medication adherence, appointment attendance/retention in care, and ultimately virologic suppression.[6–9] However, we contend that these indicators are better seen as distal outcomes of engagement in care rather than defining dimensions of the care engagement process.

To better understand and support patients in achieving optimal clinical outcomes, patient perspective on the process and dimensions of engagement in care must be defined and measured. Existing measures have attempted to capture the role of the patient in health promotion, such as the Patient Activation Measure[10] and the Patient Health Engagement Scale.[11] However, the complicated social environment of HIV creates unique challenges characterized by social stigma and the disproportionate concentration of HIV in racial, ethnic, sexual, and gender minority communities and people who use drugs. Furthermore, these social factors were not directly considered during the development of other measurement approaches. To meet these challenges, we developed and validated a patient-centered measure of engagement in HIV care that would allow for the detection of deficits in perceived engagement in care before the emergence of problematic clinical outcomes such as poor ART adherence, nonpersistence, suboptimal retention in care, virologic failure, and subsequent onward HIV transmission.

We describe the development and preliminary validation of the HIV Index of Engagement, a 10-item self-report, patient-centered screener of engagement in care. In developing and validating the instrument, we ensured high representation among groups disproportionately impacted by HIV and the researchers and providers who work with them. Such a measure could be used to identify problematic levels of engagement in care, thereby triggering efforts to mitigate poor engagement before clinical outcomes are negatively impacted.