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Detecting Disengagement From HIV Care Before It Is Too Late

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

Johnson, Mallory O. PhDa; Neilands, Torsten B. PhDa; Koester, Kimberly A. PhDa; Wood, Troy MAa; Sauceda, John A. PhDa; Dilworth, Samantha E. MSa; Mugavero, Michael J. MDb; Crane, Heidi M. MDc; Fredericksen, Rob J. PhDc; Mayer, Kenneth H. MDd; Mathews, William C. MDe; Moore, Richard D. MDf; Napravnik, Sonia PhDg; Christopoulos, Katerina A. MD, MPHh

JAIDS Journal of Acquired Immune Deficiency Syndromes: June 1, 2019 - Volume 81 - Issue 2 - p 145–152
doi: 10.1097/QAI.0000000000002000
Implementation Science

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.

aDepartment of Medicine, University of California, San Francisco, CA;

bDepartment of Medicine, University of Alabama at Birmingham, Birmingham, AL;

cDepartment of Medicine, University of Washington, Seattle, WA;

dFenway Health and Department of Medicine, The Fenway Institute, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA;

eDepartment of Medicine, University of California, San Diego, San Diego, CA;

fDepartment of Medicine, Johns Hopkins University, Baltimore, MD;

gDepartment of Medicine, University of North Carolina, Chapel Hill, NC; and

hDepartment of Medicine, Zuckerberg San Francisco General Hospital, University of California, San Francisco, San Francisco, CA.

Correspondence to: Mallory O. Johnson, PhD, Department of Medicine, University of California, San Francisco, 550 16th Street, 3rd Floor, San Francisco, CA 94158 (e-mail:

Supported by the following grants from the National Institutes of Health: R01MH102198, R24AI067039, P30AI027763, K24DA037034 (M.O.J.), K01MH113475 (J.A.S.), P30AI027757 (H.M.C.), U01AA020793 (R.J.F.), P30AI027767 (M.J.M.), P30AI094189 (R.D.M.), DA036935 (R.D.M.), and P30AI50410 (S.N.).

The authors have no conflicts of interest to report.

Received October 10, 2018

Accepted January 16, 2019

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