Continuing high rates of loss to follow-up in antiretroviral treatment programmes among people already on treatment and those waiting to start treatment are a symptom of health system failures, not the fault of patients, the Eighteenth International AIDS Conference heard last week.
In a session at the International AIDS Conference that focused on retention in care of ART patients, studies from Malawi, Tanzania and Mozambique were presented that dealt with reducing loss to follow up and treatment default.
Research in Malawi and Kenya on people in urgent need of antiretroviral therapy has shown that large numbers of patients are lost to follow-up before they are able to initiate treatment, with the highest rate of loss during the first two months after enrolment in care, prior to commencing antiretroviral treatment.1
Rony Zachariah of Medécins sans Frontières, the principal investigator of the study, argued that by ignoring the loss to follow up of these patients, and only reporting loss to follow-up among those who have already started treatment, cohort reporting artificially reduces rates of patient attrition.
Zachariah explained: “Pre-ART patients are a population that has been neglected. Data collected from 2004 to 2008 show that attrition rates have dropped, but there’s a baseline attrition rate in Kenya and Malawi between 20 and 50%.”
Earlier initiation can go a long way. Patients want tablets. They don’t want a pat on the back and an instruction to come back in six months to a year. They don’t want ‘wellness programmes’. These are often badly thought through and don’t resonate with people. They want a meaningful engagement with the health-care system that affirms them as patients. Francois Venter, head of the Southern African HIV Clinicians Society
The study was a retrospective analysis of retention in care among 14,942 adults registered as eligible for antiretroviral treatment in two MSF programmes in Malawi and Kenya. In Malawi 23% were lost to follow-up before they started treatment, and in Kenya 33% were lost to follow-up during this period.
Risk factors for loss-to-follow-up common to both sites during this pre-ART phase were more advanced HIV disease (WHO stage 3 or 4), body mass index below 17, and age below 35 years.
A study by Julia Luebbert conducted in Malawi found that the most common reason cited by patients for defaulting was travelling long distances to clinics.2 Other primary reasons for default and loss to follow up included death, transfer to another clinic, and treatment holidays. Luebbert explained “Some patients took treatment gaps even though they had not run out of pills.”
Peer educators help to improve ART adherence
A study conducted by Miyaho Bupamba et al, from the Columbia International Centre for AIDS Care and Treatment Programme, showed similarly high baseline rates of attrition.3 The study, which looked at how to improve retention in care was based on defaulter tracing over 18 months at 41 care and treatment centres in Tanzania, with nearly 10,000 active clients on ART.
Peer educators were hired to provide group and individual counseling, to facilitate referrals, and to conduct home-based visits. Bupamba noted, “There were standardised criteria in selecting peer educators. They had to be HIV-positive, physically capable, willing and committed, and trained in the basics of HIV, behavioural risk reduction, treatment adherence and psychological support”.
Bupamba explained: “The peer educators were given a stipend, and were provided with ongoing supervision and support.” She noted that the peer educators provided “important support linkages to community services.”
They conducted defaulter tracing for ART clients who had not returned to the clinic within two weeks after missing an appointment. “One of their tasks was to follow-up defaulting clients in their homes, to document their vital status, and to encourage them to return,” she explained.
The results of the study indicated that 3,949 clients were reported to have missed appointments or to be lost to follow up. The peer educators reached personally or confirmed the vital status of 2,820 of those clients (69%).
When asked about satisfaction levels among the peer educators, and whether they were “willing to keep doing this in the long run”, Bupamba responded: “With incentives, people want to continue volunteering. But we do need mechanisms on the ground to ensure sustainability. We’re still advocating for the Ministry of Health to develop a policy to support the work of peer educators.”
In the fourth presentation in the session, Joana Falcao presented the results of research conducted in Mozambique.4 The threefold objectives of the study were “to improve adherence through home visits for defaulters and patients lost to follow up; to offer supportive home visits to patients co-infected by TB/HIV; and to promote educational and retention strategies.”
A total of 17,000 home visits were made, and 73% of the 12,000 patients lost to follow-up were returned to care. The primary challenges included “high numbers of incorrect addresses and the inconsistent use of mechanisms to detect early defaulters.” Because of low rates of literacy, data entry systems required intensive supervision. However, the results proved the efficacy of the intervention. Due to the visits of peer educators and phone calls to trace patients, rates of loss-to-follow up were significantly decreased.
“Fear of the unknown”
Francois Venter, the head of the Southern African HIV Clinicians Society explained the reasons for early rates of patient attrition pre-ART: “There’s a lot of fear of the unknown. There’s a fear of tablets, and of subjugating one’s autonomy to the health-care system. A lot of the time, patients are also very sick.”
When asked about lowering rates of patient attrition pre-ART, Venter explained: “Earlier initiation can go a long way. Patients want tablets. They don’t want a pat on the back and an instruction to come back in six months to a year. They don’t want ‘wellness programmes’. These are often badly thought through and don’t resonate with people. They want a meaningful engagement with the health-care system that affirms them as patients. ARVs are one aspect of this, but there are other important aspects, such as proper treatment by healthcare workers, receiving blood tests, and having their files adequately maintained.”
Venter also recommended that patients receive a broader range of services beyond healthcare: “If the patient says ‘I need help getting a social grant, I need to have my kids tested, I need to pop in on the weekend’, they should be accommodated.”
“The larger the cohort, the simpler it must become”
Lyson Tenthani, who presented research on monitoring retention in Malawi’s ART programme,4noted: “Long-term retention rates remain unsatisfactory. This is likely due to late ART initiation in the early stages of ART scale-up. We are having to bear the consequences of the history of the problem. There are serious constraints regarding ART access in Malawi, critical shortages of human resources and financial resources.”
Tenthani noted that, in the six years since Malawi’s ART roll-out began, it has achieved 55% coverage. He attributed Malawi’s successes in ART scale-up to “its capacity to successfully shift some tasks away from clinicians. Work is mostly done by nurses, medical assistants and clinical officers rather than physicians.”
Zachariah echoed Tenthani’s emphasis on the importance of task-shifting. He explained that task-shifting is crucial in the sustainability of the ART roll-out, and called for a reduction in “tedious documentation”. “Doctors should be treating patients, not pushing paper”, he stated.
The simplicity of the Malawian programme has also been a crucial ingredient in its success. Tenthani stated: “The programme itself so simplified, it’s mainly one first-line combination made available to the majority of patients. This underlies the programme’s success.”
Zachariah concurred: “The larger the cohort, the simpler it must become. In the test and treat era, we are acting too late. The point is not to reduce defaulters, the point is to prevent defaulters. We must make the health system more accessible and services more simple. The problem lies not with patients, but with health systems.”
[1] Zachariah R et al. High loss-to-follow-up rate among individuals in urgent need of antiretroviral treatment in Malawi and Kenya – cohort reporting that does not include this group is biased and misleading. Eighteenth International AIDS Conference, Vienna, abstract MOAE0301, 2010.
[2] Luebbert J et al. Patterns of ART re-uptake – the effectiveness of the ‘back-to-care’ programme in Lilongwe, Malawi. Eighteenth International AIDS Conference, Vienna, abstract MOAE0302, 2010.
[3] Bupamba et al. “Ambassadors for adherence”: provision of highly effective default tracing and re-engagement by peer educators in Tanzania. Eighteenth International AIDS Conference, Vienna, abstract MOAE0303, 2010.
[4] Falcao J et al. Involving PLHIV in successful home visit system to improve antiretroviral therapy (ART) programme retention in Mozambique. Eighteenth International AIDS Conference, Vienna, abstract MOAE0304, 2010.
[5] Tenthani L et al. Monitoring retention and mortality in Malawi’s National ART Programme: improved outcomes with earlier treatment initiation and decentralization of services’ Eighteenth International AIDS Conference, Vienna, abstract MOAE0305, 2010.