First Year in Care Critical to Retention, HIV Suppression

Heather Boerner

November 12, 2016

ATLANTA — A decade ago, the majority of new HIV cases could be traced to people living with HIV who did not know it. Today, the vast majority of new cases in the United States come from people who know they are infected with HIV but who are not in care.

"If we want to end the HIV epidemic, we've got to do a better job of retention," said Carlos del Rio, MD, from the Emory University Center for AIDS Research in Atlanta, here at the Association of Nurses in AIDS Care 2016.

Not being in care is bad for the patient, but "it's also bad for the community," he told Medscape Medical News.

The good news, said Dr del Rio, is that once we get people engaged in long-term care, rates of viral suppression are high. The bad news is that there are few data on how to retain people in care.

He was involved in a previous review of rapid HIV testing, which revealed that patients had an average of five encounters with the healthcare system in the 2 years before they were diagnosed with HIV (Curr HIV/AIDS Rep. 2006;3:169-175).

One patient had been in the hospital the year before his diagnosis and was sure he had been tested for HIV because blood had been taken from him blood every day, Dr del Rio reported. But he hadn't. When the patient was finally diagnosed, he had a CD4 count of 50 cells/mm³.

"These patients reach us on a regular basis," he said. "I can assure you that they come — they are in the emergency rooms, they drop in. We just have trouble keeping them engaged."

 
If I'm told I have HIV today, I want an appointment tomorrow.
 

In 2010, the National HIV/AIDS Strategy called for linking people to care within 60 days of diagnosis. In 2015, that was revised to 30 days. Dr del Rio's clinic aims for 72 hours.

"If you tell me to wait 3 months, then this isn't that important," said Dr del Rio. "If I'm told I have HIV today, I want an appointment tomorrow."

Once linked, patients need to be closely monitored, especially in the first year of care.

A previous study showed that the rate of long-term mortality more than doubled when patients missed visits in the first year after diagnosis (Clin Infect Dis. 2009;48:248-256), so Dr del Rio encourages nurses to intervene at the first missed appointment.

"When somebody in the first year doesn't show for their appointment, that person is telling us, 'I have a problem'," he said. "That is somebody we need to intervene with, to find out why he or she didn't show up and what we need to do as a system to transform ourselves."

Understanding Who Falls Out of Care

Right now, young people and black people have the highest risk for HIV, Dr Del Rio reported. These are also the groups with the lowest rates of engagement in care.

Social determinants of health, including poverty, have been implicated in low retention rates, he said, but this alone isn't enough to explain the problem.

"The reality is that we have a lot of black people and poor people who do very well," said Dr del Rio. "We need to get a little more granular."

He and his team devised a short-form questionnaire to help identify patients who are likely to fall out of care.

The data they collected showed that being poor and unemployed are associated with disengagement in care. But so is another, more surprising, factor: a frequent change in phone number.

That result drew a round of "ahas" from the audience.

"I frequently hear researchers who are not involved in care say, 'We need to use text messaging'," said Dr del Rio. "But if people don't have the same number, text messaging doesn't work."

Alanna Bergman, MSN, CRNP, from the Einstein Medical Center, said the work described here reflects that done in her clinic by a social worker who is dedicated to retention in care.

And the social worker goes even further, visiting inpatients who are newly diagnosed in the hospital, before they are discharged, to link them to care, she explained.

Bergman said she agrees that having some measure to identify patients who might fall out of care would be helpful, but she suspects it will be different at different clinics. In her clinic, for instance, she said most of her patients are young black men who have sex with men — people at the highest risk for HIV but who have the lowest rates of care retention.

"They should not be engaged in care at all, but they are," she said. "Other patients look perfect on paper — they have a job, they seem stable — and you never see them again."

Camila Hunter, RN, from a Ryan White Care clinic in Columbia, South Carolina, left the meeting with a list of points to bring back to her team. They include connecting with the four hospitals and other clinics in her area to see if people who are not being seen in her clinic are perhaps being seen elsewhere, and removing barriers to getting people linked to care within 72 hours.

"We need to get to 72-hour linkage to care, and I think we can do it," she told Medscape Medical News. "I feel inspired to go back and say, 'I've got a plan and I heard a play that maybe we could implement in our clinic'."

Dr del Rio serves as editor of Journal Watch HIV/AIDS for the Massachusetts Medical Society. Ms Bergman and Ms Hunter have disclosed no relevant financial relationships.

Association of Nurses in AIDS Care (ANAC) 2016: Abstract PN-1. Presented November 11, 2016.

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