Success at Johns Hopkins
In 2012, Nolan and others at Johns Hopkins set up a new program they called Accessing Care Early (ACE) -- a carve-out within the adult clinic that would cater to people ages 18 to 29.
"Prior to this, we had a pediatric HIV clinic and an adult HIV clinic, and there was no room in between for adolescents," she said. Interestingly, the ACE team decided not to focus on viral load as a primary measure of success for the program. Rather, they focused on retention in care.
"We had goals, but our first goal wasn't viral load suppression," said Nolan. "We had to get them in the door, and we're not going to get them virally suppressed until we get them in the door again and again and again."
Patients were referred to the ACE program from one of three places: 18-year-olds who aged out of their pediatric care, young people who had been recently diagnosed, or young people who had a prior diagnosis and were not showing up to their appointments at the adult clinic.
To qualify for the program, patients also had to have a dual diagnosis, such as a mental health disorder, housing instability, or a substance use disorder. Once enrolled, patients were set up to meet with a nurse within three days -- key to keeping their attention, Nolan said.
Those visits were ideally about 30 minutes and ended with a warm introduction to the social worker and psychiatrist working in the ACE program. "We didn't use the word psychiatrist," Nolan said, because it might dissuade patients from taking advantage of that aspect of ACE's services.
The final step was a visit with the physician, usually scheduled for within two to four weeks. Throughout the program, the care team met in weekly rounds over the phone.
The ACE program has been a success, Nolan said.
"The cohort has grown from 40 patients in 2012 to 140 patients now," she said. According to an analysis of the ACE program from 2012 to 2014, ACE patients had better retention in care than young people receiving care in the adult HIV clinic (49% versus 26%).
There was a lower rate of patients lost to follow-up in the ACE program compared with young people in the adult clinic (16% versus 37%). ACE patients were also more likely to use the social worker, psychiatry, and other services than their peers in the adult clinic. Both of those metrics were statistically significant.
Though they didn't focus on viral load, Nolan recognized that viral load is an important outcome. And, disappointingly, the ACE cohort didn't have better viral suppression rates, on average, than non-ACE patients (60% versus 89%).
However, Nolan pointed out that the viral suppression achieved by the ACE program (60%) was better than the average viral load suppression in the city of Baltimore for young people ages 20 to 29 (44.4%).
"That's not statistically significant," Nolan said, "but it is data."
The ACE program will be summarized in a forthcoming Journal of AIDS Care paper titled "Impact of a youth-focused care model on retention and virologic suppression among young adults with HIV cared for in an adult HIV clinic."
Ultimately, the goal of the ACE program is to help young adults transition into a typical adult clinical setting. "We want them to be independently successful in our own complex health system," Nolan said.
For any nurses or physicians hoping to replicate ACE's success in their own HIV clinics, Nolan offers this advice: Start small.
"We have this great robust program now," she said, "but it was built in steps."