Keeping clients engaged in care
Julia Hidalgo, of George Washington University, outlined lessons learned from the HIV Care Collaborative, and best practices to keep patients in care. She included a case study of a patient who dropped out of care and couldn’t be located, because every member of her care team – including her family doctor, psychiatrist, case manager, outreach worker, pharmacist, and care navigator – had different and conflicting information about her and never compared notes.
“For many folks, ‘fully engaged’ is a temporal thing, and there may be vacations from treatment.”
Working with low-resource health departments in Georgia, Texas, and Pennsylvania, the HIV Care Collaborative focused on moving people newly diagnosed with HIV into care within 90 days. Over the course of three years, 1,340 clients were served. Barriers to linkage and retention included homelessness and unstable housing, recent incarceration, lack of transportation, lack of telephone access, and employment in low-wage jobs with no sick leave. Many clients had hypertension, diabetes, hepatitis C, mental illness, or substance use issues, and many did not have identity documents.
Hidalgo discussed the challenges in linking clients to HIV care and offered recommendations based on project outcomes:
- Plan for how to transfer caseloads when clinic workers leave. Many clinics have high turnover; supervisors should have the ability and capacity to take over if needed.
- Simplify administration and reduce the amount of paperwork required. Many staff members had low educational attainment and found it challenging to work with progress notes and other forms of documentation.
- Explain how the health care system works. Tell clients how they can expect to move through the system and which documents they will need.
- Take clients to their appointments or arrange transportation. Transportation is a major barrier; accompanying a client to appointments or using a service like Uber allows case managers to verify that the client arrived.
- Follow up quickly if appointments are missed. The more time that goes by without any contact from the client, the less chance there is of re-engaging them in care.
- Revisit why clients dropped out of care during intake. If clients have dropped out of care in the past, finding out why can help clinics avoid repeating the same situation.
- Make the warm handshake between linkage workers and care teams more like a hug.
- Keep promises. Case managers should keep track of promises they make to clients and ensure that they take action; a string of broken promises can cause a client to leave.
- Focus on retention rather than re-engagement. Long waiting lists to get into care are a barrier; once clients are in care, focus on keeping them there.
- Ask clients who they always stay in contact with. Rather than relying on an “emergency contact,” find out who the client always stays in contact with, even in times of trouble. This person can help case managers locate clients who drop out of care.
- Listen for information indicating that a client might drop out of care. For example, clients might talk about wanting to move to another jurisdiction or having to attend a parole hearing.
Hidalgo emphasized that the entire care team, including reception staff, play a role in keeping clients engaged in care. She explained that one of her first steps is always to visit clinics incognito and observe both how reception staff treat incoming clients and how clients treat reception staff. In order for retention and engagement programs to succeed, the entire team needs to understand and be supported in the goal of retaining clients in care.
Reducing sexual risk behaviours
Seth Kalichman, of the University of Connecticut, outlined Remix, an evolution of an earlier intervention called In the Mix, which focused on sexual risk reduction.
Explaining the need for behavioural interventions, Kalichman explained that successful biomedical interventions such as pre-exposure prophylaxis (PrEP) have been rolled out in combination with other interventions, as was the case in the HPTN 052 trials. He also noted that, even in high-income countries with good treatment options and high rates of viral suppression, HIV incidence rates continue to rise, and argued that patients who test negative for HIV should still receive some form of counselling on risk reduction.
With this in mind, In the Mix was an integrated adherence and sexual risk reduction intervention, based in Atlanta, Georgia, that involved two individual counselling sessions bookending five group sessions. Sessions featured interactive activities and demonstrations, including an exercise that allowed participants to simulate counting and sorting pills while drunk or high. Discussion explored disclosure, sexually-transmitted infections, and factors that can interfere with behavioural change, such as moods and feelings, substance use, viral load levels, and social relationships.
Compared to a control group that received time-matched health education focused on topics such as stress and nutrition, In the Mix participants had better adherence by the end of the intervention. At six-month follow-up, they were also less likely to engage in sex without condoms.
Kalichman explained that the project team realized the intervention worked, but couldn’t be used in most settings because of the need to facilitate seven face-to-face sessions. The solution was developing Remix, a version of In the Mix that can be delivered mostly over the phone. At the time of the conference, results from a trial of Remix had just started to come in, but looked promising.
Leveraging new technologies for interventions
Travis Lovejoy, of Oregon Health and Science University, discussed new technologies to combat depression and isolation among people living in rural areas.
Often, rural communities have fewer health services and higher rates of HIV stigma. In the United States, depression is 3 times more common among people living with HIV, and 1.5 times more common in rural areas. Lovejoy noted that, in Canada, it’s estimated that up to 20% of people living with HIV are in rural communities, but there was little data available.
Lovejoy explained that studies have found that tele-therapy, including individual and group therapy, can reduce depression. Feedback from participants indicates that they would like to see photos of or learn more about the members of their therapy groups. Some researchers have argued that groups need to meet in person at least once before teleconferencing.
Although video chat applications have been available for some time, the bandwidth required to use them can create a barrier to entry for rural residents, as the network infrastructure might not be in place.
Lovejoy emphasized that technology is currently changing faster than clinical trials can keep up with, citing a paper from William Riley and colleagues that called for rapid research methods. In the paper, the authors identify 5 major technology products that came to market for the first time between 2006 and 2012 – the same length of time it would take to complete a single randomized control trial. In order for technology-based interventions to be relevant, Lovejoy argued, researchers need to consider more efficient ways to test them.