Detecting Disengagement From HIV Care Before It Is Too Late: Development and Preliminary Validation of a Novel Index of Engagement in HIV Care

J Acquir Immune Defic Syndr. 2019 Jun 1;81(2):145-152. doi: 10.1097/QAI.0000000000002000.


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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Anti-Retroviral Agents / therapeutic use*
  • Anxiety
  • Depression
  • Female
  • Focus Groups
  • HIV Infections / diagnosis
  • HIV Infections / drug therapy*
  • HIV Infections / psychology*
  • Humans
  • Internet / statistics & numerical data
  • Male
  • Medication Adherence / statistics & numerical data
  • Middle Aged
  • Patient Acceptance of Health Care*
  • Patient Participation*
  • Physician-Patient Relations
  • Retention in Care
  • Self Report
  • Social Media / statistics & numerical data
  • Social Stigma
  • Surveys and Questionnaires
  • Treatment Outcome
  • Viral Load
  • Young Adult


  • Anti-Retroviral Agents