Loss to Follow-Up from HIV Care Affects Nearly Half of People with HIV

Strategic Insights -

Researchers at the University of Wisconsin-Madison have conducted a study to identify clinical phenotypes of people with HIV using electronic health record (EHR) data and assess their association with loss to follow-up (LTFU). The study, funded by the National Institute of Mental Health (NIMH), analyzed data from 4,316 visits of 849 adults receiving care at an urban Ryan White Clinic between 2017 and 2020. The results revealed six distinct patient subgroups, each with unique characteristics and associations with LTFU and high viral load.

Key Takeaways:

  • The study found that loss to follow-up affects nearly half of people with HIV, with a rate of 47%.
  • The researchers identified six distinct patient subgroups, each with unique characteristics and associations with LTFU and high viral load.
  • The subgroups were identified as:

+ Class 1: higher rates of substance use and cardiovascular disease, with a 1.57 times higher risk of LTFU.

+ Class 2: younger men, new patients, with a 1.57 times higher risk of LTFU and a 1.74 times higher risk of viral load.

+ Class 3: primarily women, with frequent mentions of 'pregnancy' in notes.

+ Class 4: more likely to be white or Hispanic, with increased LTFU risk (OR 1.39) and decreased risk of unsuppressed HIV viral load (OR 0.65).

+ Class 5: more sexually active, with mentions of 'good adherence' in notes.

+ Class 6: older men, with fewer mentions of 'mental illness' or 'STI' in notes.

  • The study suggests that identifying clinical phenotypes could inform strategies to improve retention in HIV care for individuals with HIV.

Statistics:

  • 4,316 visits analyzed from 849 adults receiving care at an urban Ryan White Clinic between 2017 and 2020.
  • 47% of people with HIV experience loss to follow-up from care.
  • Subgroup Class 2 has a 1.57 times higher risk of LTFU.
  • Subgroup Class 2 has a 1.74 times higher risk of viral load.
  • Subgroup Class 4 has an increased LTFU risk of 1.39.
  • Subgroup Class 4 has a decreased risk of unsuppressed HIV viral load of 0.65.

Sources:

  • Identification of Clinical Phenotypes Among People with HIV Using Electronic Health Record Data. AIDS and Behavior, 2025.