Nurse-Led Program Bridges Gap Between HIV Diagnosis and Linkage to Care

Justin Alves, RN, and Theresa Minukas, RN
Sony Salzman

When Justin Alves, RN, and Theresa Minukas, RN, started working at Massachusetts General Hospital, they noticed that follow-through in HIV care varied heavily by department. HIV-positive patients at their outpatient clinic were highly engaged in care; however, patients with HIV who were admitted to inpatient settings, such as the emergency department (ED) or intensive care unit (ICU), were at risk of being lost to follow-up.

Alves and Minukas developed a hypothesis: They could improve retention in care by simply walking across campus to the ED, ICU or other inpatient setting to meet the patient, consult with the local care team and initiate a "warm hand-off" to the outpatient clinic where they worked.

Their idea was that this would be a nursing-led initiative. "We're trying to prove that the nursing-patient relationship is what's making a difference in keeping them in care," Minukas said.

In 2016, they launched a pilot program to test their hypothesis. They called it ZPAR, which incorporates the letter "Z," a shorthand code for HIV used by the Mass General staff, plus the acronym for "patient at risk."

After tracking 34 ZPAR patients from 2016 to 2017, Alves presented results of the nursing-led pilot program on Nov. 3 at the 30th annual Association of Nurses in AIDS Care conference in Dallas, Texas.

The ZPAR pilot program saw greater than 90% retention in care, Alves reported -- meaning more than 90% of patients enrolled in the program were engaged in care at the first follow-up outpatient visit.

The retention in 2016 specifically was 100%, with all 21 patients flagged and correctly referred to HIV services retained in care at the first visit.

That means retention rates in ZPAR were on-par with those seen at the outpatient clinic, where "about 95% of patients show up for their first appointment," said Rajesh Gandhi, M.D., director of HIV clinical services and education at Massachusetts General Hospital.

The fact that linkage to care in ZPAR was almost equivalent to the outpatient setting is significant, Gandhi noted, because outpatient HIV clients are typically highly engaged in care. An average patient seen at the outpatient clinic might be someone who was previously engaged in care out of state, but recently moved to Boston, Gandhi said.

Meanwhile, many of the high-risk ZPAR patients have been admitted to the ED or ICU for acute HIV symptoms, and many are struggling with opioid use, Gandhi explained.

"To have a high linkage rate like that is remarkable," said Gandhi, who added that he and the other clinician leaders at Mass General championed the ZPAR program from the beginning. "It shows you can take people who are at much greater risk of falling out of care than our typical person, and at least link them to care."

Under ZPAR, clinical staff in the inpatient setting are trained to identify and flag two types of HIV-positive patients: people who were admitted to the hospital for acute symptoms, and people who were just diagnosed. Then, clinicians send an email to notify the ZPAR team. At that point, one of the outpatient nurses walks over to meet the patient, to exchange contact information, and to help craft a discharge plan.

HIV nurses, explained Alves, understand what it takes to get patients engaged in care. They know about programs like the HIV Drug Assistance Program (HDAP) and other services that can become crucial resources for people with HIV immediately after being discharged.

"The attrition rate when you're trying to get people from awareness to diagnoses to treatment is really challenging, and I think that's a perfect place for nurses to come in, because we can help people overcome some of those systemic barriers," said Haley MacLeod, RN, the HIV care coordinator at Country Doctor Community Clinic in Seattle. MacLeod was not involved with ZPAR, but worked at a hospital with a similar model.

The data Alves and Minukas collected through ZPAR helped convince decision-makers at Mass General to give them a green light to formally implement the model throughout the entire hospital.

They developed a protocol around which patients should be flagged as ZPAR candidates, and now doctors hospital-wide are trained in that protocol in meetings and informal settings, Gandhi explained.

"The hospital has now bought into our program because they're seeing the difference," Minukas said.

"It saves money in the long run, because it keeps [patients] from being readmitted, keeps them engaged in care and keep them out of the ED," Alves said.

Still, Alves and Gandhi pointed out that the model might not work for everyone, especially smaller clinical settings where only one nurse is available to participate. At Mass General, Alves says he can afford to walk across campus because he knows the other nurses are there at the infectious disease clinic to take care of outpatient clients.

"I was able to go inpatient and spend hours with patients because I knew [Minukas] was going to take care of all my patients. I didn't have to worry about that," Alves said. In addition, the hospital had the resources to hire another nurse at the outpatient clinic to help manage workload.

"At a small center where it's one nurse running the whole show, [that's] impossible," Alves said.

Although ZPAR may not work in all settings, Alves and Minukas hope to one day bring the ZPAR model to other large hospitals. One of the key challenges, according to Gandhi, will be to continuously train clinical staff on the ZPAR protocol, especially in hospital settings with a high turnover rate.

"The lesson [we] learned is that HIV care is still a subspecialty among nursing," Alves said. In particular, "HIV care and management is a specialty that is well done in the outpatient setting, [but] at this point pretty poorly well done in the inpatient setting."

The ZPAR program is "trying to bridge that gap [by bringing] really great outpatient services in before the patient leaves the hospital," said Alves. "That's the key to keep these folks engaged. Having a nurse who cares enough to make that happens is really the piece that connects these two. "