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


HIV Index scores were associated with estimates of retention in care, self-reported recent treatment adherence, and viral suppression. Findings support the existence of a single factor of perceived engagement in care that was associated in expected directions with symptoms of depression, alcohol and substance use, and HIV-related stigma. Our findings underscore the multifaceted experience of engagement in care that considers nuanced perspectives of patients living with HIV. The final items included in the HIV Index reflect the central features of patient centeredness, as reflected in the literature and including recognition of the patient as a unique person, the importance of patient involvement in care, and the centrality of patient–provider communication.[37,38] The current study represents a first but critical step in identifying and addressing suboptimal engagement in HIV care. Next steps will determine how well the HIV Index performs longitudinally and will explore its potential use in clinical care settings to identify patients who are feeling disengaged in care, but before suboptimal outcomes occur, including ART nonadherence or nonpersistence, missing appointments, or dropping out of care altogether. The resulting failure to suppress HIV viral load can lead to increased morbidity, elevated likelihood of HIV transmission, and decreased survival.

Our work to date, although promising with robust findings, is introductory. We used concurrent and retrospective data to provide evidence of the preliminary validity of the HIV Index. Therefore, it is not possible to determine causal relationship to other factors such as depression, or outcomes such as retention in care and viral suppression. The next test of the HIV Index will be whether it accurately predicts outcomes over time. To that end, prospective studies are needed to carefully evaluate the predictive value of the HIV Index over time.

Other future work will evaluate how the HIV Index performs with subpopulations disproportionately impacted by HIV, including sexual and gender minority individuals from racial and ethnic minority backgrounds and people who use drugs. As people living with HIV live longer, we are interested in exploring how engagement in HIV care varies in the presence of comorbidities, such as diabetes, cardiovascular disease, hepatitis C, and cancer. We also plan to explore empirically supported clinical cutoff scores for use in clinical screening settings and will evaluate potential short forms of the HIV Index. Finally, we see the HIV Index as an opportunity to embed timely interventions into clinical care for patients who indicate low perceived engagement in care, so that real-time responses can be triggered to address actionable concerns before clinical outcomes are adversely affected.

There are other considerations that should be taken into account when interpreting the current findings. First, although we included a diverse sample of patients from a range of sites in several geographic regions in the United States, these sites were HIV specialty care clinics affiliated with research universities, and they tended to serve more urban patient populations. The sample had a high proportion of virologic suppression (90%) compared with other US samples, which show estimates closer to 81%.[39] Data reflecting how the HIV Index performs in other settings with other patient groups are needed. Second, the use of the CNICS infrastructure meant that all patients included in analyses had been in care at the site for at least 2 clinic visits, and therefore, they may be described as well linked to care. Similarly, to be able to compare sufficient time periods to detect clinic visit patterns, the appointment attendance analyses were only conducted on data from patients who had at least a 12-month history at the clinic. Given this consideration, some of the items may not be relevant to patients who are newly diagnosed or new to care and may not have sufficient exposure to the clinic and their provider to have formed impressions. Third, at most sites, patients complete the clinical assessment as part of routine care, so refusal rates are low; however, patients who arrive very late, are intoxicated, or are acutely ill are not asked to complete the assessment, which may have resulted in the exclusion of some patients, including potentially those who may have been at greatest risk of poor outcomes. Finally, our ART adherence assessment relied on self-report, which is prone to reporting biases.[40] However, the viral load outcome was extracted from laboratory assays and appointment attendance from the EHR, eliminating recall and other reporting biases.

Overall, there is encouraging support for the HIV Index, a 10-item self-administered approach to assessing patient perceptions of engagement in HIV care. Preliminary evidence provides support for the HIV Index's association with modifiable factors such as depressive symptoms, substance use, and HIV-related stigma and with relevant clinical variables including ART adherence, retention in care, and HIV viral suppression. The HIV Index offers a potentially powerful patient-centered diagnostic tool that can strengthen efforts to combat the HIV epidemic through successfully and meaningfully engaging patients in care, and identifying prevalent, modifiable psychiatric and psychological intervention targets, toward the goal of improving the quality and span of the lives of people living with HIV.