Improving Patient Antiretroviral Therapy Retention through Community Adherence Groups in Zambia

What was the problem?

Antiretroviral therapy (ART) is frequently distributed via health facilities and their pharmacies. An increased volume of medically-stable patients at facilities reduces the time clinicians can spend with those who require acute care and also discourages patients from attaining care, due to long wait times.  For medically-stable patients, going to a health facility for monthly refill pickup reduces the likelihood of retention on treatment for a variety of factors, including the transportation costs and financial losses of time missed at work incurred by a trip to the health facility . Importantly, retention on ART is vital to the health of HIV-positive individuals, but also to the well-being of the communities in which they live. Achieving higher rates of retention among HIV-positive patients, then, is crucial.

What is the solution?

This is a fantastic and innovative model! It should be duplicated among many similar facilities. For people facing long journeys and long waiting times to get ART this could make a huge difference.
— Lwiimba lay-counselor

The PEPFAR-supported Centers for Infectious Disease Research in Zambia (CIDRZ) has developed and is implementing Community-based Adherence Groups (CAGs). CAGs provide routine ART management to patients, decongest high-volume facilities, and minimize difficulties in accessing ART sites. Groups are self-forming and patients are allowed to join the groups they are comfortable with. The groups develop and maintain a feedback system with the health facility through community health workers. Patients must also follow an agreed code of conduct. Members take turns visiting the health facility to collect a three-month supply of medications for all group members. They also complete a routine clinical exam during the visit.

Currently, CIDRZ runs 856 CAGs at 21 facilities across 5 Districts in the Lusaka, Eastern, and Southern Provinces of Zambia.

What was the impact?

CAGs show high linkage to treatment: through CAGs, 4,375 people were tested for HIV via index testing in fiscal year (FY) 2016. Of those, 540 (12%) tested positive. All of these clients were linked to treatment. CIDRZ will restart index testing and partner notification through CAGs in FY 2018. Given the larger scale, CIDRZ will aim to link at least 90 percent of all clients who test positive to treatment. Linkage to care and treatment is easier through CAGs, as clients have established relationships with volunteers and it is easier to follow up with HIV-positive clients.

Clients who participate in CAGs are also more likely to stay on treatment. ART retention is 97% for patients participating in CAGs compared to 76% amongst patients within the standard care model at health facilities. Additionally, local medication collection at a time convenient to the patients has resulted in high patient satisfaction.

Service providers and clients at health facilities also see benefits through reduced waiting times and lowered congestion at ART clinics. Providers perceived a decrease in burden of care and are advocating for wider use of differentiated care programs, such as CAGs.

How does it work?

Starting a community-based adherence group (CAG)

At health facilities, all patients receive health education as they wait to see clinicians for routine visits. Those willing to join a CAG are screened for eligibility during their appointment. Stable patients who have been on ART for at least 6 months may participate in the program. They should not have any active opportunistic infections (OIs), and should have a CD4 of >200 and viral load of <1000. They should be ≥ 15 years of age. Clinicians then refer eligible patients to community health workers (CHWs) who explain the model in detail. CHWs help patients identify other potential group members to screen for eligibility.

Once an individual group has been formed, the CAG is assigned a community health worker (CHW) who sets up a meeting at the facility to define group norms, review the Code of Conduct, sign consent forms, and share contact information. CAGs may be formed for specific population groups, such as adolescents, couples, or any other demographics that patients may be comfortable with. Those who do not know other potential group members are grouped with patients from the same catchment area.

At one of the original pilot sites, Chilenje First Level Hospital in Lusaka, some CAGs included unstable clients. Stable clients may provide psychosocial support to unstable clients, resulting in improved adherence. Unstable clients also receive support from a dedicated, multidisciplinary clinical team at the facility who is trained to work with patients with complicated diseases. Viral load tests are given every 3 months to look for improved viral load suppression in unstable clients.

Making treatment more accessible

The Ministry of Health is engaged in selecting sites and actively involved in the roll-out plan of CAGs. Patients participating in CAGs meet routinely in the community to discuss adherence issues and to offer each other psychosocial support.

Being a CAG member has helped me not to miss school and build relationships with the staff at the clinic. It also reinforces positive adherence behaviors amongst us members.
— Mathews Nkhoma, Chilenje First Level Hospital adolescent CAG member

CIDRZ provides multiple-months drug dispensing for every patient participating in the CAGs. Each CAG has six patients who take turns visiting the ART clinic for consultations and antiretroviral (ARV) drug collection. During the clinic visit, the patient will receive the scheduled clinical consultation and collect a 3-month supply of ARVs for each of the CAG members.  When they get back, the patient gives the rest of the CAG members their ARVs at a CAG meeting. Each patient has two clinical visits a year and goes to the clinic for the appointment, even if it is not their turn to collect medications.

 Each CAG is assigned a CHW who provides basic psychosocial and clinical support to the CAG members. CHWs interact with patients during routine clinical visits and during each CAG meeting. If a CAG member is unwell and needs clinical attention, they either self-refer or are referred back to the clinic by the CHW. The CAG members also provide peer support to each other. Due to the psychosocial and peer support, member satisfaction has been very high.

In addition to ARV drug dispensing, adherence and psychosocial support, CAGs are also used as entry points for index testing. Through partner notification and index testing, children, spouses, and other sexual partners of CAG members are tested for HIV and linked to treatment if positive.

When a CAG is first formed, group members will receive one month’s supply of ARVs. Groups must be monitored to ensure each member collects the ARVs when required, and that there are no conflicts or any issues between members that will affect participation in the CAG. Once the group is stable, they graduate to multi-month dispensing.

Increasing health systems efficiency

CIDRZ worked closely with the Ministry of Health to ensure the various concepts of the innovation were understood before implementation and scale-up. CIDRZ targeted high-volume sites and oriented facility staff on how to use the model. Ongoing mentorship and support is offered routinely to implementing facilities to ensure success. This innovation must not be seen as an implementing partner initiative, but as a Ministry of Health initiative that will result in better retention amongst clients and decongestion of health facilities, leading to improved quality of care.

Reducing the burden on already saturated health systems is an ever-increasing challenge in resource limited settings. Stable patient, will need limited interaction with their health facilities if they are to continue with new ART initiations. So, monitoring and adherence support in the community is critical and CAGs have helped in achieving this.
— Sister Mwelwa Kanyinda, Chilenje First Level Hospital ART In-Charge

CAGs not only reduce the burden placed on clinics, but also improve retention and medication adherence. Also, CAGs reduce drug resistance cases, as patients are better able to fit the management of HIV around their home and work lives. Additionally, HIV-related stigma and discrimination can be reduced with CAGs, as people living with HIV (PLHIV) are no longer only considered as ill patients.

The CAG model reduces the workload of the health staff, freeing up more time to attend to complicated cases. Also, the CAG model decongests the clinic since more clients are accessing treatment outside of the facility. Clinicians have better access to patients’ information regarding pill adherence, wellbeing, and treatment outcomes through a direct feedback loop between group members and healthcare workers

Discussions are underway with the Ministry of Health for adoption of the CAG model as standard of care. It is hoped that this innovation will be treated as one of the models of care with financial allocation from the Ministry of Health to support implementation nationally.

Identifying and working with advocates

CAGs enable patients to be more involved in the management of their health through active participation and access to ART treatment. In rural areas, traditional leadership had supported the initiative. Through Senior Community Advisors, meetings have been held with chiefs and headmen who provide support of the initiative, ensuring members of the community buy into the intervention and participate fully. 

The lay counsellors’ teachings on sexual reproductive health programs in the CAGs ensures us, the young people living with HIV, to have the knowledge, skills and confidence to make good decisions and we are linked to care including STI and family planning services. I want to learn life skills and how to improve my health. I am going to be a leader.
— Sangwani Zimba Chilenje First Level Hospital adolescent CAG member 

In some rural areas, villages can be up to 60 kilometers from health facilities. CAGs have lessened the number of times participants have to travel to health facilities, thereby improving patients’ satisfaction and adherence to treatment. CAGs also reduce patients’ travel costs to access treatment. In urban areas, this required advocacy from Neighborhood Health Committees that, have considerable influence in communities on city outskirts. Additionally, advocacy and support by facility staff and volunteers was needed to drive the intervention at the facility-level.

The Ministry of Health is critical to establishing support at the national level. A focal point person focusing on differentiated service delivery (DSD) is now in place at the Ministry of Health and the 2018 National Guidelines have been revised to include DSD interventions.

What’s Next?

In the 2018 Zambia Ministry of Health Consolidated ART Guidelines, differentiated models of care have been included as an approach for service delivery. Successful pilot implementation of DSD models has enabled stakeholders to advocate for scale-up in other facilities, especially at high-volume sites. The CAG model is seen as an avenue for reaching out to untested PLHIV by involving patients in the groups as indexes and role models.

Currently, there is a DSD Task Force, which is led by the Ministry of Health through a DSD Focal Point Person. This Task Force develops policy, as well as guidelines on DSD, and provides oversight for implementation at the Ministry of Health level.

The pilot phase of the model commenced in April 2016 and approval to implement at-scale was granted by the Ministry of Health in March 2017.  CIDRZ is scaling up the model in all Lusaka high volume sites in Quarter 1 of FY 2018 (October to December 2017) and to high volume sites in Western, Southern and Eastern Provinces in Quarter 2 of FY 2018 (January to March 2018).

Revised by the PEPFAR Solutions Team, May 2018