A study from the Perelman School of Medicine at the University of Pennsylvania, reveals that only approximately 75% of individuals in the U.S. with HIV/AIDS consistently stay in care. The study, published online this week in AIDS, is the first to provide a comprehensive national estimate of HIV care retention and information about which patients are more likely to remain in care.

Baligh R. Yehia, M.D., lead author of the study and a fellow in the division of Infectious Disease and the Health Policy Research Program at Penn Medicine, explained:

“Helping patients with HIV stay in care is a key way to reduce their chances of getting sick from their disease and prevent the spread of HIV in the community. Our findings show that too many patients are falling through the cracks.

The benefits of keeping patients in care are clear both for patients and the community at large, and it may even result in decreased health care costs by preventing unnecessary hospitalization for an acute illness.”

17,425 adult patients receiving care at 12 clinics within the HIV Research Network were examined by the researchers. The Network is a consortium that provides care for individuals with HIV across the country.

Over the timeframe studied, the researchers found that only 42% of patients examined had what they defined as “no gap” in treatment – periods of no more than 6 months between outpatient visits, while 31% of patients had one of more gaps in care of 7 to 12 months.

In addition, they found that 28% of patients went without care for over a year one or more times.

At present, there is no gold standard on the most effective way to measure retention in care. As a result the researchers used 3 different measures of retention to analyze each patient’s visit record.

The researchers found those who were more likely to stay in care more consistently were:

  • Patients who began treatment on Medicare – versus those on private insurance
  • Older patients
  • Male patients who were infected through sex with men
  • White patients
  • and Women

In addition, patients whose CD4 counts (the measure of how advanced the disease is) were extremely low, at the point linked to AIDS, when they began receiving care, were also more likely to remain in care more consistently.

According to the researchers, findings from the study may help clinicians in evaluating which patients are more likely to remain in care, as well as develop intervention methods in order to improve patients’ chances of sticking to their care.

Senior author of the study and Yehia’s mentor, Kelly Gebo, M.D., an associate professor of Medicine at the Johns Hopkins University School of Medicine, said:

“Clinicians need to know what barriers to screen for, so our findings help to better define groups of patients who may require extra help to stay on track.”

The researchers highlight that individuals who do not have symptoms may believe they are not ill enough to need regular visits their their care providers. In addition, mental illness, housing, financial problems, transportation, and substance abuse can all contribute to care retention problems.

As patients who are at different stages of their disease have additional health conditions or certain social circumstances may require unique care plans, making it difficult to evaluate aggregate retention over the entire HIV population, it is vital that a standardized criteria for deciding the appropriate time between visits in developed.

Furthermore, as patients may move often, change doctors, become institutionalized, or go to jail and still receive care during those times, the team state that further studies, such as research involving data from insurance records, are required in order to track patients across those situations.

It remains to be seen how HIV therapy retention will change in the future, as for many the disease has become a chronic condition that has affected their lives for decades.

Yehia, explains:

“It’s possible that as time goes by, some patients may become more regular users of care, while others may become complacent and skip appointments. We need to better pinpoint times when certain patients may be less likely to remain in treatment and find ways to ensure their continued care.”

As well as Yehia and Josh Metlay, MD, PhD, also from Penn, other researchers of the study include investigators from Hopkins, Oregon Health and Sciences University, and the Agency for Healthcare Research and Quality.

Written by Grace Rattue