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Desmond Tutu HIV Centre
International AIDS Society
Faculty of Health Sciences
University of Cape Town,
Cape Town, South Africa
Linda-Gail Bekker, MBChB, DTM&H, DCH, FCP(SA), PhD: consultant/advisor/speaker: Cepheid, Gilead, Janssen (Johnson & Johnson), Merck (MSD), ViiV.
In Africa and as a world, we have fallen behind in the UNAIDS goals to end the HIV epidemic. That paradigm describes reaching the goals of 95% of people with HIV diagnosed, receiving antiretroviral therapy (ART), and virologically suppressed by 2030. Healthcare professionals know that we’re also behind on a very important fourth major goal, which is to improve health-related quality of life of people with HIV (PWH)—that is, seeing the whole patient, not just their HIV infection—including their comorbidities and their self-perceived quality of life.
Focusing on health-related quality of life is key in retaining PWH in care in Africa and around the globe. Why would PWH return to us if they didn’t feel as if they were thriving? One of the biggest challenges we face as healthcare professionals is how we organize our services so that PWH feel that they do indeed want to stay in our care.
Engagement in Care Is Dynamic
We have come to realize that PWH cycle in and out of care; we recognize that PWH may not stay in treatment forever, but also they may not be lost to follow-up forever. Our patients have difficulties and challenges in their lives that may compete with their ability to remain in care.
A retrospective, population-based cohort study of more than 16,000 PWH in North Carolina showed that approximately 25% had consistently high engagement in care during the 10-year period of the study. An additional 15% exhibited what might be interpreted as fatigue: They started well but their engagement steadily declined. Another 17% started slow and then picked up after approximately 3 years and yet another 15% started slow and then picked up after approximately 5 years. The most concerning trend was the final 25% of PWH whose engagement in care was consistently low. The bottom line is that we really need to recognize life’s difficulties in in the PWH we serve and try to meet them on their own terms if we want them to be successful in care.
The United States HIV/AIDS Bureau did a survey of Ryan White clinics. They defined retention in care as more than 1 outpatient visit by September 1 of the measurement year, with a second visit ≥90 days after the first. They measured 80% annual care retention during a 4-year period.
They also found that the people who struggled most to stay engaged in care were younger, those who were using Veteran’s Administration health benefits, and those who had structural barriers such as unstable housing. The message from both studies is that outreach, peer navigation, love, and support can really help to engage and then—if needed—re-engage PWH.
Differentiated Service Delivery
The World Health Organization has recommended development of a differentiated service delivery model to help deal with retention in care. We need to establish the when, the who, the where, and the what when we develop a framework of caring for PWH.
The South African Department of Health runs the largest HIV treatment program in the world. It has had to differentiate services because health delivery is provided to an incredible array of PWH.
Some of the services offered are external pickup points for medications—termed a preferred collection modality—which ramped up in the acute phases of COVID-19. Private pharmacies, community pickup points, and lockers became places for medication dispensation that replaced going to the clinic. Currently, 1.6 million PWH in South Africa are collecting their ART refills from a community pickup point. Facility pickup was still available for those to wished to go to the clinic, and adherence clubs were a third service delivery point. All of these centers are facilitated by a Chronic Dispensing Unit run by the Department of Health.
During the COVID-19 pandemic, we also offer courier service delivery for adolescents. Overwhelmingly, adolescents prefer this courier service, so we’ve maintained it because they prefer to pick up their medications away from the clinics.
Adherence Interventions for ART Users With Incomplete Adherence
Several studies have been undertaken to assess the interventions that work for PWH with incomplete adherence. Some of the successes include enhanced adherence counseling strategies that included screening for depression. Novel intensive adherence counseling with multiple interventions including directly observed treatment, text reminders, alarms, peer self-help groups, and other similar interventions were also effective.
In many cases, adherence issues reflect individuals struggling with other priorities, including buying food and paying for electricity. Economic strengthening programs can be important in helping individuals cope with daily living. Outright cash transfers and food baskets have also been shown to work, particularly for postpartum PWH who are struggling with the new reality of providing for both themselves and their babies.
Behavioral self-regulation programs help people cope and develop self-reliance by helping them deal with such things as stigma and drug misuse.
Quality-of-care interventions involve healthcare professionals taking a hard look at our practices and improving the kind of services we provide. It includes counseling and follow-up, shortened waiting time, better record keeping, sending outreach workers into the community to find individuals who are lost to follow-up, providing peer counselors—all the things we should be doing to provide best care.
Goals for Retention in Care
What are the goals we aim for when we’re trying to improve retention in care? We need to be working toward self-care, empowering PWH to be their own advocates for best outcomes. We want to be proactive in helping them find interventions that work best for them.
Rapport with the patient is key, in particular with adolescents. We personally may not be able to spend the time that is required, but we should not overlook our clinic colleagues who may be able to build that rapport when we don’t have time.
There are other measures we can use such as point-of-care virologic assays so that we can provide immediate reassurance that our patients’ efforts in taking their medications and attending clinic appointments are really achieving the desired result of virologic suppression—so that we can tell them, “You are winning in this game.”
Interventions for High-Risk Groups
It is important that we tailor our strategies to meet the needs of some of our PWH who may require specific attention. Local ART clinics have worked with postpartum PWH in helping them manage their lives with their new babies. For those with opioid use disorder, treating their drug abuse increased ART uptake and adherence, and virologic suppression. Adolescents need tailored care; for them, technology often works with text reminders and computer-delivered messages.
The bottom line is that effective adherence interventions may be different for different populations. We must remember that good HIV care is person-centered care—tailored care for the PWH in your region whom you are serving.
What interventions have you implemented in your clinic or health system to help re-engage people who are struggling with adherence to ART or to care? What has worked and what hasn’t? Leave a comment and join the conversation.