Brief, Patient-Reported Engagement Survey Associated With Virologic Control Among Patients With HIV

sample blood collection tube
Sample blood collection tube with HIV test label in laboratory.
Study authors investigated the association between a brief, self-reported measure of engagement in HIV care and viral suppression outcomes.

A 10-item, patient-reported index for patients with HIV was associated with viral suppression (VS) and retention. These findings, from a cohort study, were published in Clinical Infectious Diseases.

Researchers recruited patients from 8 HIV clinics in the United States. Patient medical records (N=3398) were combined with patient-reported outcomes and collected every 4-6 months. Between 2016 and 2017, the 10-item Index was added to the patient-reported outcome assessment.

The Index assessed patient comfort with and trust of their healthcare provider. Each of the 10 items were scored on a 5-point Likert scale and total scores were averaged.

Over half of patients were aged 50 years or older (53%), 78.6% identified as cis-gendered men, 19% identified as cis-gendered women, 44.3% were White, 41% were Black, 34% identified as heterosexual, and 10% had unsuppressed viral load. Patients had been participating in this cohort study for a median of 7.04 years (interquartile range [IQR], 3.1-12.3), and the mean Index score was 4.5.

Among the 2736 participants with adequate follow-up and complete data, the median number of scheduled appointments was 4 (IQR, 2-6) and 75% of appointments were attended by 70% of patients. The median viral load measured at attended appointments was 2 (IQR, 1-3) and 19% of patients had a least 1 unsuppressed measurement.

Unsuppressed viral load was associated with Index score (adjusted odds ratio [aOR], 0.48; 95% CI, 0.31-0.73; P =.001) and time spent participating in this study cohort (aOR, 0.95; 95% CI, 0.90-1.00; P =.05).

Missing appointments was associated with younger age (18-29 years; aOR, 2.94; 95% CI, 2.35-3.68; P <.0001), ethnicity (Black; aOR, 1.51; 95% CI, 1.26-1.80; P <.0001), time spent participating in this cohort study (aOR, 0.97; 95% CI, 0.95-0.98; P <.0001), and Index score (aOR, 0.69; 95% CI, 0.61-0.77; P <.0001).

Index score was associated with retention and viral load.

This study may have been limited by its study population, which had an established relationship with their care providers and a relatively high rate of viral suppression and retention.

These data indicated a brief screening tool, the Index, effectively gauged patient engagement and had the potential to allow for early intervention to improve patient attitudes or to identify patient concerns.


Christopoulos K A, Neilands T B, Koester K A, et al. The HIV index: using a patient-reported outcome on engagement in HIV care to explain sub-optimal retention in care and virologic control. Clin Infect Dis. 2020;ciaa1892. doi:10.1093/cid/ciaa1892.